Appearances - of - Power - Part 2

Chapter 7: Ways forward
7.1 Introduction
The findings presented in the previous two chapters expand upon current
conceptualizations of user involvement in health research by taking into consideration
trends in knowledge development and tensions about user involvement. As explained in
the introduction, an aim of the study has been to improve upon current
conceptualizations of user involvement, which are limited in their ability to reflect the
changing relationships, intermittent successes, emergent problems, unaccounted for
failures, life changing experiences and moral values that shape thinking and practice
within this field. I have so far shown that ideas about service user/researcher
relationships are influenced by wider conceptual themes about knowledge, needs and
rights, responsibility and representation. In this chapter I look at possible ways forward
for developing knowledge in this area. The chapter firstly looks at current concerns to
develop an evidence base in this field and suggests a framework for what this might
comprise. It then goes on to explore how resistance and spaces for manoeuvre might
offer places for knowledge development. Divergences between rationale, dynamic
relationships and inconsistencies in reporting, as well as alternative language/terms,
epistemological stances and subjective experiences and views offer ways forward in this
particular field of research. In the final section attention is paid to how subjective
experiences and views might provide avenues for future research.
7.2 Framework for an evidence base
Perhaps the most pressing concern in relation to user involvement in health research is
the question of what an evidence base should look like and what rules should govern its
construction. The same concern has been expressed in relation to patient and public
involvement in health services (Murie and Douglas-Scott 2004) but this chapter focuses
on directions for developing the evidence base specifically for user involvement in
health research.
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A growing number of individuals, teams and organisations are working towards

increasing knowledge of user involvement in research. For example the Patient &
Public Involvement Project Group of the UK Clinical Research Collaboration is
particularly interested in defining current projects and activities that are in some way
researching, evaluating or reflecting on the impact of patient and public involvement in
research. The group has developed an online activities log where researchers can
register their work (www.ukcrc.org). As of March 2008 eight projects had been
returned, these were: a Delphi study on the feasibility of evaluating the impact of public
involvement in health research, a developmental evaluation of the impact of consumer
involvement in primary care research, a research study to identify the impact of service
user involvement on the lives of people affected by cancer, an INVOLVE research
project on the nature, extent and impact of active public involvement in research, a
mapping project including the presence of patient and public involvement in priority
setting amongst the main UK clinical research funders, a research study modelling
sexual healthcare for substance misusing women, an event on public involvement in
health research commissioning and funding, and a systematic review of research reports
about patients', clinicians' and researchers' priorities for research.
The organisation InvoNET (supported by INVOLVE and Worthing and Southlands

NHS Trust) was set up to support research into public involvement in health and social
care research. The first meeting of the network raised issues about evidence for user
involvement in health research.
{Trigger (App3/Date:07.03.06): Launch meeting of InvoNET}

There were approximately 50 participants at the meeting from a wide range
of backgrounds. The closing session was a panel discussion. The audience
raised the following issues:
- Is there evidence for user involvement in research? - some people say
no, some say yes.
- Why do we not pool our experiences together and use it as a lobbying
tool? – produce a simple summary of the evidence.
- Is there a need for this type of research when all researchers should be
doing it anyway? Why do we need evidence? – for convincing and
influencing. Service users need to understand what they are getting
involved in and what impact it can have.
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- Hierarchies of scientific evidence do not support user involvement-

experience and opinion are not valued as highly as scientific evidence.
- Connections and networks can be hidden or informal.
- Why is it important to influence others about public involvement?
- What more can be done to encourage more research on the contribution
and impact of public involvement in research?
- Concepts of user involvement run the risk of compartmentalizing it; is it
not better to just get on and do it accepting that it can be organic,
flexible and unexpected? There is personal learning about what works
with projects – can’t researchers find their own way?
The heated discussion about ‘promoting’ user involvement in health
research suggests that individuals or small teams of people are struggling
to convince others (professional researchers and research commissioners)
about the benefits of involving service users in research. Much emphasis
was placed on the perceived need to show, or ‘to prove’ the worth of user
involvement. Individuals said – “we need to prove that it can work”, “we
need to show it has benefits for patients and researchers” “we need to show
that it doesn't take vast amounts of time and money, and it is actually
achievable”.
Two years later the issue of an evidence-base remained the focus of the meeting but the
debate was broadened by the presentation of opposing positions on the necessity of an
evidence-base:
{Trigger (App3/Date:21.02.08): InvoNET seminar}

In a debate about whether we need evidence for user involvement in health
research, Professor Mark Petticrew provided a helpful summary of what an
evidence base might include. Rather than perceiving evidence as simply
information for the effectiveness of user involvement, he suggested that it
should comprise information about the:
- size of an issue/problem or activity
- effectiveness solutions
- wants/acceptability/experience.
Mark also suggested that evidence can help to show what works best and
to avoid hidden harms and costs, and that evidence has convincing power.
Arguing against the motion, Alan Simpson suggested that the need to
show evidence for user involvement strengthens domination by valuing
the knowledges of ruling groups. Alan used the concept of hegemony
(social domination) to make this argument.
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Ideas expressed in the study data can be developed to include different types of purpose
and underpinning ideas about priorities. These points are illustrated by the following
figure.
Figure 30: Framework for an evidence base
Perspectives
Size of an issue/problem or activity
Effectiveness solutions
Wants/acceptability/experiences
↑
Purposes
Confirmation of an idea
Description of what is known
Analysis/meaning making
↑
Priorities
What is important? What
is useful?
What might lead to change?
The important thing is that the development of understandings about user involvement
in health research is undertaken in the knowledge that contemporary concepts of
evidence tend to rule in particular perspectives of knowledge (discussed in chapter 5).
That is, opinions about scientific evidence are often associated with established methods
of experimentation, and with particular concepts of reason and consensus, rather than
with exploration, meaning-making and emancipation. The former tend to portray
research as a rational pursuit of certainty and guarantees about the world (Irwin 2006).
Such a view might not always be the best perspective to understand the range of issues
user involvement raises. In particular user involvement in health research could be
constrained by particular notions of reason. Reason can imply a process of reaching
certainty of meaning, which can lead to a totalitarian view of how reality is or should
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be. Reasoning may involve weighing up the issue to reach a conclusion – a process
which could potentially dismiss what is uncertain, what doesn't fit or what is different.
Furthermore, an assumption could be made that something reasoned is universal,
timeless and stable rather than provisional and relative (Gadamer 1998). Similarly, the
use of certain consensus methods can imply that what the majority of respondents are
thinking or doing at a particular time should become best practice. Consensus type
studies can lead to ‘recipe knowledge', that is the production of bullet points and
principles that are upheld as best practice – yet any particular practice is unlikely to suit
every context or every person. Contrasting views expressed through this study suggest
that a lack of consensus can be a productive force because it provides the possibility of
perceiving and relating to an issue in different ways.
Context emerges as an important issue for building knowledge of user involvement.

Without understanding the richer elements of context it is difficult to locate existing
knowledges about relationship building techniques. The way some research evidence is
constructed can mask what is happening by focusing on particular types of interventions
or outcomes. In relation to user involvement there is a danger of over simplifying the
range of professional groups, clinical activities, research methods, client groups and
their diversity of needs that research relates to (Steel 2005); and disregarding more
subtle outcomes such as opportunities to share knowledge with others and gain greater
intercultural understanding (Rhodes et al. 2002). In this study researchers in the UK and
Australia talked about user involvement as a way of achieving change and sustaining
change in service provision and as a way of involving front line staff in service change.
These types of iterative outcomes may not be detectable within the lifetime of any one
particular study that has involved service users.
(PARTICIPANT 2 - AUS): I really feel that you have got to have not only evidence and support
from the consumers to support management to provide those recourses. In other words the
pressure has got to come, from the consumers in order to convince management for this to happen
and for it to continue… You have to have all levels involved and I don't think you can do it with
just one group in isolation. I think that is extremely important. You have other benefits for staff
around that as well, in terms of their involvement, and empowerment, whatever that means. It
gives them a sense of ownership, their involvement makes it more likely that it will be acceptable
and appropriate in that environment.
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In the discussion at InvoNET, concerns about showing evidence of impact were

underpinned by a concern to strengthen researcher commitment to user involvement.

There was general agreement amongst participants at the meeting that
evidence was not only needed to convince research commissioners and
members of the research community that user involvement works, but
there was also a need to show service users that their involvement could or
had influenced the research. One participant said “It won’t work if service
users are not seeing evidence of impact, real change; they just won’t think
it’s worthwhile”.
The view presented above suggests progress towards user involvement should be the
imperative and research should support this not undermine it: suggesting a fear that
pejorative accounts could be used as evidence to abrogate policies for user involvement.
It is uncertain whether participants in the discussion perceived progress towards user
involvement to mean greater total numbers of service users involved in research, or
some other notion such as greater acceptance of the value of user involvement amongst
the research community or more user-controlled research.

Another tension was raised during the discussion: the issue of being brave
and bold about tensions that can arise through user involvement in health
research. Participants at the meeting wanted to encourage honest accounts
of tensions but there was a concern that these might ‘scare people away’
from research or from user involvement. One participant said “we don’t
want to make it out to be more of an issue that it is; the debates shouldn’t
stand in the way of progress”.
In the presence of strong views about the need to improve quality and safety of health
research (Chapter 2) it is not surprising that attention has turned to the issue of negative
outcomes and consequences of user involvement in research. Assessing the
‘positive/negative' outcomes for participants has been useful in the context of
community-focused health research, where it has helped to inform recruitment strategies
and ethical procedures. For example, in an Australian study of illicit drug research
(Barratt et al. 2007) participants perceived positive aspects of participation to be its
capacity to provide information about drug use, the potential to improve policies and
practices as well as benefits to the community. Negative aspects of participation
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included concerns about lack of, or negative impact of research findings, personal
dislikes about research projects such as discomfort and inconvenience. In the context of
palliative care research, understanding potential risks has helped to maximize the
benefits of participation (Fine 2003). Other accounts suggest that user involvement
creates situations where service users are fearful or unwilling to disclose their views
(Lowes and Hulatt 2005). Beresford (2002) takes a broader view of the issue and calls
for a more critical and systematic approach to research in this filed to explore
‘regressive' as well as ‘progressive' potential. As a contribution to this endeavour, the
following figure draws together issues about different types of outcomes, including
potential benefits and drawbacks at the levels of the individual person, research practice
and society.
Figure 31: Outcome issues associated with user involvement in health research
Drawbacks Issues Benefits
• New forms of vulnerability, • Information about health

stigma and fear issues
• Increased time, skills and • Financial reward,
effort that involvement recognition, access to
Personal
requires social opportunities
• Inconvenience, discomfort, • Sense of being heard and
risk included in decisions
• Stimulus for thinking
• Meeting requirements for

• Concerns and tensions Research involvement can help
associated with perceived process & secure funding
threat to quality of research, outcomes • More acceptable research
and validity of user practices
involvement in different • More appropriate
research contexts outcomes/knowledges
• Research that meets

• Resources drawn away Societal societal needs for
from research knowledge
• More emphasis on
possibilities for change and
increased ownership of
change
Interrelated
IMPACTS
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7.3 Reasons for resistance
Findings from this study show that resistance towards user involvement in health
research can be professional, systemic and paradigmic. Examples of how these sites
may offer ways to develop knowledge of user involvement in health research are
provided here.
Researcher resistance
The extent to which user involvement in research is a contested idea is frequently not
made explicit in formal academic and research debate and resistance towards user
involvement in research amongst professional researchers should not be underestimated
(Beresford 2007). Baxter and colleagues have argued that:
“Lack of time and money are frequently cited as barriers to active lay
involvement in research. More time and money are needed to engage lay
people, and to allow for change in the agenda as the process proceeds. Some
agencies encourage active participation in research through their funding
application procedures” (Baxter et al. 2001, p.vii)
The notion of standing conditions is a useful way of thinking about resourcing as a set
of issues rather than simply an issue of who controls research budgets. In Dahl's (1961)
work resources are defined in terms of the distribution of cash, popularity and control
over jobs, and control over information sources. Dahl suggests that resource utilization
is related to the notions of political skill and costs involved in utilizing resources. Dahl
usefully shows that resource control will already structure the political field prior to any
specific relational action occurring. In this study researchers employed in higher
education institutions talked about balancing commitment to user involvement with
other responsibilities associated with working in an academic department. This was not
simply seen as a capacity issue but as a tension between organisational and personal
expectations of the researcher role. It might be that some ‘resisting' researchers wish to
work with service users but they do not have the resources, capacity or incentives to do
this. Dahl's work can be usefully applied in the context of user involvement in health
research to approach resource issues as including: the awarding of research grants,
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ability to secure research funds and appoint staff, and control over information about
funding. And, as Dahl suggests, resourcing is also an issue of skill and costs involved in
utilizing and managing resources (Dahl 1961).
{Trigger (App3/Date:21.10.05): Discussion group with Australia healthcare

researchers}
A participant wanted to know ‘Was it difficult to recruit the service user
reference group to the multi-method review’. My response was ‘Yes, but
not because of a lack of interest on the part of service users. The participant
then said ‘But you paid the group so that must have helped?’ I replied ‘Yes
I think it did help, but it was a moderate payment and often participants
passed the fee on to their organisations’. Another participant said that
‘Payment is not a luxury that all researchers can afford’. Two things struck
me about this conversation: commitment at a commissioning level is
essential for supporting researchers to involve service users; and
researchers who do not have this support can express frustration about this
but also rationalize this by viewing involvement as being a luxury rather
than an essential component of research.
Issues of researcher resistance to user involvement are certainly intertwined with

resource and capacity issues, but there are also important philosophical and
methodological dimensions to resistance. Epistemological debates about the standing of
lay knowledge within health research (for example, Entwistle et al. 1998; Pawson et al.
2003) suggest that resistance is not simply a question of researcher skills or knowledge
of technique. Hence, it is important to gain an understanding of the nature of resistance
rather than to simply view resistance simply as an issue of resourcing or professional
ignorance. Some researchers may not believe that it is appropriate, ethical or worthwhile
to involve service users in the type of research they are undertaking. The following
reflective note illustrates the strength of such views:
{Trigger (App3/Date:04.10.06): Presentation on user involvement in stroke

research at St Thomas’ Hospital}
Following the presentation there were four or five questions from the
audience, who were all practicing health care professionals. There was a
huge amount of scepticism about letting service users anywhere near
research. The main line of criticism was that individuals should not be
permitted to influence research or service level decisions because patients
always had an agenda and they were not able to be objective about issues.
One person, a senior medical doctor, asked whether any Randomized
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Controlled Trials had shown that user involvement was beneficial to

research. Another person commented that user involvement is not
representative, and therefore it could never be fair.
It may be that politically-driven requirements for user involvement imbue immediate

professional commitment to working with service users, but they may also present a
barrier to understanding deeper rooted points of tension. In health service development
some resistance from professionals has been attributed to a fear of raising service user's
expectations or provoking dissatisfaction (Poulton 1999). This is a valid concern that
indicates a more fundamental issue about the nature of the relationships that can occur.
{Trigger (App3/Date:23.08.04): “Learning from the patient experience”

Conference: Open-floor discussion}
The meeting surfaced considerable anxiety about the potential
consequences of involving service users. Both clinicians and researchers
were reluctant to involve service users because of a fear that it might
provoke or expose negative views or dissatisfaction. One member of the
audience (a general practitioner working in Lambeth) suggested there is a
‘them and us culture’ between professionals and patients. Another member
of the audience suggested that they had experienced tensions trying to
involve patient representatives because of their high expectations about
what could be achieved.
It appears that some researchers want their practices to be more grounded in service user
issues yet they do not want to become personally embroiled with the real life contexts of
such issues. To understand why service user/researcher relationships do or do not occur
requires understanding ‘micro' personal views and judgements about user involvement.
It is also important to consider the influence of the ‘macro' contexts within which such
judgements might occur. In the concluding chapter I draw together insights from this
study to present a model for such an enquiry (see section 9.4).
Systemic resistance
The reason behind apparent resistance to user involvement in some areas of health
research could be in part attributable to the barriers of existing research structures and
systems. DiMaggio and Powell (1983) suggest that within organisations “institutional
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isomorphism” can operate through collective rationalization of established systems and

processes, whether or not these processes are working.
Michael Mann uses the concept of “organisational outflanking” (Mann 1986, p.8) to
explain why it is typically easier to comply with existing systems than to seek to
change them. He suggests that lacking the organisational resources to outmanoeuvre
existing networks and alliances of power, subordinated agencies are usually able to
achieve affective resistance only on the basis of a collective organisation for which they
frequently lack capacities for action. One such example of how systemic resistance can
accumulate is in relation to ethical decision making about the involvement of very ill
people in research. Findings from this study support the view that even people
experiencing very serious life-limiting illnesses may be interested in being involved,
and given suitable support and appropriate means of involvement, are able to be
involved (Addington-Hall 2002; Cotterell et al. 2005; Bradburn and Maher 2005). The
following extracts from interviews with Australian researchers in palliative care
substantiate this point. Several researchers were open about saying that they would
avoid undertaking research about particular issues and advise students not to plan to
undertake research with groups that were perceived to be vulnerable.
(PARTICIPANT 2 - AUS): It has been extremely difficult to get permission from the ethics and
research committee to get access to residents and their families... It gets to the point where people
are choosing not to do particular research, with particular people in particular areas.
(PARTICIPANT 4 - AUS): I even hear it in myself when I walk into a classroom with honours
students about to undertake research, I say ‘here are the vulnerable populations, don't go there,
just don't go there at all. It's just too hard…The entire research agenda is not driven by the needs
of the people in the area it's driven by what you can get through an ethics committee.
Although these views were expressed by Australian researchers it seems highly likely
that some researchers will tend to avoid developing research about particular topics,
patient groups or geographical areas because of the barriers to involving hard to reach
groups. This reluctance may be particularly significant where research concerns
relatively small or disparate patient groups because of the additional burden of
submission to multiple ethics committees. The consequence could be that the positive
potential of research does not benefit these groups – an inverse Hawthorne effect, where
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what is not watched stays the same. A related issue that participants raised was that
service users are often unaware of the cumulative affect of ‘protective' acts which
prevent them from deciding whether they want to be part of a research study.
(PARTICIPANT 5 - AUS): If you are trying to gain access to the patients themselves, if they are
sick and if they are at home then you have got relatives, family members who are worried about
access as well. They do want to participate most of them…From my experience they feel that it
might benefit someone else so they are happy to participate… Often we do not give patients that
sort of choice; we don't give them that responsibility.
They can make their own mind up.
The influence of ethics committees, healthcare providers, family members and carers
were also cited as being particular barriers to notifying potential participants about
research. In the UK this situation may be mediated by the pledge set out in the NHS
Constitution (DH 2008b) to inform service users of clinical research that they may wish
to participate in. It seems unlikely that this policy change will reduce the contribution of
research processes to the durability of health inequalities (Scambler 2001).
Paradigmic resistance
Resistance towards user involvement in health research can also be perceived in a

broader philosophical context. Philosophical thinking about conventions and rules
provides useful perspectives on how user involvement relates to established social
practices. Stein Haugom Olsen suggests that “convention linked to reason becomes the
guarantee of stability and uniformity” (Olsen 2000 p.35). If convention is the result of
rational agreement between rational agents it is inherently conservative. Social
conventions are contingent since they might have been different; however they are not
arbitrary for those on whom they are imposed since those people are made subject by
particular norms (p.36). Constitutive rules define social institutions (such as health
research) and are necessary to describe and participate in the behaviour sanctioned by
the rules. Changing the constitutive rules of an institution changes the activity defined
by the rules (p.37). In many ways user involvement challenges the constitutive rules of
health research. Paradigmic processes could serve to consolidate user involvement
within research practice or to marginalize it. This form of normalizing power is not
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simply attributable to the domination of organisational or professional power over

individual practice it is linked to the way a society thinks.
Paradigmic resistance can explain some of the challenges which are associated with
research assessment. Despite a growing commitment from research commissioners
towards user involvement in health research these trends are moderated by research
assessment criteria as established under the UK Research Assessment Exercise (RAE).
The RAE assesses the value of research according research outputs and studies that use
randomized and controlled methods. A notable exception was that the 2008 RAE
nursing panel included a user perspective as represented by the Director of INVOLVE
(Sarah Buckland) and user involvement was considered as one indicator for quality.
Whilst it is still undecided whether particular domains of health research (including
health services research, policy research and nursing research) will be assessed as stem
subjects in the future, whichever system is applied will place a greater emphasis on the
use of citation index metrics.
In this study, visiting Australia provided an opportunity to look at how assessment

based on metrics was being played out and the potential implications for user
involvement in health research. Some Australian participants, who were members of
academic departments, described feeling encouraged to produce particular types of
research outputs, illustrated by the interview extract below and an issue raised in one of
the group discussions (Appendix 3: Discussion group, Ref: 21.10.05). These
participants felt that academic systems for judging research quality placed too much
emphasis on certain types of measurable outputs. It may be that the focus on
measurable outputs constructs a view of research as a product, rather than a process or a
relationship. The extract below illustrates this point and the concerns that one
participant expressed about the implications for the quality of health research.
(PARTICIPANT 1 - AUS): The universities and the way that it is set up by the policy makers tend
to encourage us to, we have to have a research output. The pressure that is put on universities to
have a research output means that they will go for the easiest possible avenue, which doesn't
necessarily mean that you are going to have the best possible research topic areas and indeed
results.
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7.4 Spaces for manoeuvre
Given that resistance can be a positive force in developing knowledge of user

involvement in health research, a related issue is where spaces for manoeuvre might be
found. These are discussed here and drawn together in figure 32.
Rationales
Ambiguity in the rationale for user involvement in health research goes against current
trends in health research commissioning and assessment to measure research according
to predefined quality indicators. Research tends to be perceived of and measured
according to clinical factors (e.g. mortality, morbidity), economics (e.g. expenditure,
efficiency), or more recently patient outcomes (e.g. quality of life, patient satisfaction).
User involvement could offer a way of rebalancing the system by emphasising quality
research processes as well as outcomes. Whilst some attention has been paid to quality
of process in the form of attention to research methodologies general trends in research
assessment do not encourage researchers to scrutinize the quality of research practice:
this is perceived as a requirement of research governance or research ethics rather than
an outcome of the research itself.
Dynamic methods
In the research literature even in the most structured and controlled research
contexts user involvement has been reported as being a dynamic process that has a
different meaning and impact according to the stage of involvement the service user
is experiencing, for example in clinical trial participation (Cox 2000). The
importance of using dynamic research processes was exemplified, for me, by the
accounts of palliative care researchers in Australia. These researchers had adapted
standard approaches to consent and participation to take into consideration emergent
ethical issues to do with changes in health status and willingness to talk on an hour-
by-hour basis.
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(PARTICIPANT 5 - AUS): Of course you have ethical standards but there are also ethical
decisions that you need to make on a day-to-day basis as a researcher and as you go along with
data collection you have got to make some of those decisions… With one patient she was actually
quite sick when I was interviewing her and I said to her ‘it's alright we will stop if you can't do it
and I will come back another day' instead of her thinking, I can't do this, oh no. I said ‘I will go
away, come back in half an hour and we will finish it'. So I just went away and got on with
something. I had to just let her have that half an hour but she was adamant that she would finish
the interview; she didn't want to abandon it totally. I only had her for two interviews she died soon
after but she was determined to participate.
The use of conversation based research methodologies was considered helpful for
gaining personal perspectives on sensitive or complex issues about health issues or
experiences of care. Researchers had developed these highly flexible approaches by
gaining an understanding of a patient's changing needs and concerns, as well as those of
their carers or family members.
(PARTICIPANT 4 - AUS): Most of the patients when I asked them I had to be very careful about
almost reassessing their consent every time I spoke to them and a number of them were quite
comfortable about saying – not today thanks, it's a bad day, go away. And I would go, you know.
That was fine.
Although these personalized approaches required more from the researcher in terms of
time and communication skills, researchers felt that in this context they were essential
for gaining access to patient experiences.
In other research contexts a dynamic approach to methods of user involvement offers

places for innovation to occur. At a project level this could mean developing a range of
ways of capturing and acknowledging the diverse contributions that service users make
to health research, enhancing processes of preparing service users for involvement,
recognizing individual needs for continuing support (and possibly combining these with
treatment or care), the incorporation of service user views into the research system, and
educating different groups of the public about user involvement in health research.
Reporting
There is an important and related issue about the implications of developing

accountability structures for the reporting and assessment of user involvement in health
research, for example research commissioners could review funded studies to see how
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plans for user involvement were played out. As I will later argue, any attempt to
measure outcomes of user involvement in health research faces the problem of
understanding intentions (see chapter 6). A particular issue is the general tendency to
report achievements and positive impact. Yet, the reporting of negative outcomes could
help to understand concerns that user involvement in research is a threat to the quality
of research.

There was general agreement amongst participants at the meeting that
incentives for engaging in the agenda needed to be made clearer and there
needed to be systems for checking that plans for user involvement have
been fulfilled. There was also a concern expressed as ‘not shooting
ourselves in the foot’, about not creating evidence that could be used
against the agenda for user involvement. There were specific concerns
about cost/benefit analysis of user involvement projects. Participants
generally wanted to create a balanced view of user involvement. One
person suggested “avoiding focusing too much on tensions and issues and
reporting more of the positive experiences and life changing events“. One
participant added that it was not realistic to expect relationships in research
to ever be perfect or to stay the same over time.
A danger is that the asperity associated with any authoritative reporting mechanism
does not allow for sentimental accountings about personal outcomes or ideological
reflections of what might have been achieved if things had been different. Reporting of
user involvement in health research through publication is a further mechanism for
knowledge development. Whilst currently little information about user involvement is
routinely published in academic papers adoption of reporting guidelines could
encourage specific types of information about user involvement to be shared. Similarly
online electronic publication databases could use key terms associated with user
involvement to support indexing of information.
Language development
Shifting definitions and terminology are an important theme of the research literature in
this field (chapter 3). I have also explained that knowledge about user involvement in
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health research has been possible because of the existence of particular terms and
phrases (chapter 5). If language makes certain knowledges permissible, it may also be
the case that new forms of knowledge can develop from places where new terminology
is devised. In this study, it was apparent that there are cultural dimensions of language
development.
{Trigger (App3/Date:19.10.05): Discussion group with Australian healthcare

researchers}
It was noticeable that few if any of the participants used the term ‘service
user’ during the interviews. Participants were more likely to talk about
patients or carers of people with a particular condition or receiving a
certain type of care. Some participants used terms to describe groups of
people involved in research studies, for example ‘residents’, ‘veterans’, ‘the
local community’ ‘indigenous people’. Neither was the term ‘involvement’
readily used by participants. Instead participants talked about these groups
as ‘being part of a study’ or ‘working with the researchers’.
Epistemological stances
User involvement has tended to emerge from situations of meaning making where the
emphasis is on change or where research practice has had to adapt to reach particular
groups of people such as Black and ethnic minority groups, people with mental health
problems, people receiving palliative care, children and young people (see chapter 3).
These findings correspond with the view that new types of research practice are likely to
be found at the periphery of established research practice because here research
paradigms and institutionalized practices are less well established. In some areas of
health research, for example learning disability and mental health, life and disability are
intertwined and it may be that people's lives should be the starting point for
understanding quality outcomes (Beresford and Branfield 2006). User involvement
offers a way of exploring in which contexts and with which groups of people service
user-defined outcomes can and should be applied.
17
Subjective experiences and views
Notions of user involvement provide framing rules for interactions between researchers
and service users (for example, consultation, collaboration, control) but these are open
to interpretation at the individual level. In particular, notions of any ‘service user' and
‘researcher' roles are open to interpretation and it may be that ‘position' is a more
helpful way of conceptualizing how individuals perceive themselves. Speed's (2006)
discourse analysis of ‘patient' ‘consumer' and ‘survivor' discourses in relation to
mental health service users in the Republic of Ireland shows that positions contain
intrinsically different ways of talking about mental illness and allude to different
conceptions of agency on the part of the service user. Speed's work shows that user
positions act as a discursive typology (which could be thought of as a range of
identities) that people can draw upon. Positions exist simultaneously and individual
people can actively draw on different discourses associated with them. In the context of
service user/researcher relationships the overall implication is that thinking more
broadly about positions rather than roles may allow a more detailed understanding of
interactions between different people who align with particular service user and
researcher positions to emerge.
The themes discussed in this chapter are summarized in the following figure to identify
ways forward for knowledge development. The following sections go on to look more
closely at how subjectivity offers three particular avenues for future research:
 experiences of power
 judgement making
 thinking styles
18
Figure 32: Opportunities for knowledge development
Tensions
Resistance Places for manoeuvre
Commitment ↔ Control Rationales Dynamic

Professional methods Reporting
Language/terms
Epistemological stances
Systemic Transparency ↔ Intentions Subjective experiences
and views
Paradigmic
Equal say ↔ Know how
Avenues for knowledge development

• Experiences of power
• Judgement making
• Ability to
• Thinking styles
• Potential to
• Sense of being
• Pre-existing views and values

• Personal-relational-social
orientation
• Ethical orientation
• Personal history
• Professional alignment
19
7.5 Experiences of power
‘Ability to’
Our personal sense of power has been described as what we are able to do: our ability
to achieve goals (Parsons 1967) or to carry out our own will (Weber 1947). In the
context of user involvement in health research power is often perceived as ability to
access means and resources, either to undertake research or to influence research.
‘Ability to' therefore involves knowing how to negotiate research systems. In this
context, ‘ability to' might include issues about voice, the notion of deliberative capacity
as it is expressed through Habermas' (1978) work on communicative action. There is a
danger that service user's ability is perceived in a narrow way leading to a cognitive
deficit model (Irwin 2006), that is, the view that service users do not have the necessary
knowledge to be able to participate in research. Bohman's (1996) notion of deliberative
inequalities helps to avoid this view by turning attention to socially constructed barriers
which prevent an ideal speech situation. This ideal position has also been referred to as
a position of interactional equality in relation to public participation in health (Brooks
2006). The perspective helps to draw attention to the barriers to participation, such as
the need for ‘jargon busting' (INVOLVE 2007b) and ‘controlled vocabularies'
(Zielstorff 2003). Other barriers identified by Bohman are illustrated by figure 33.
‘Ability to' raises the question of whether service users should be trained to participate
in research, whether research should be tailored to the abilities of service users, or
whether service users should be supported to develop their own research.
{Trigger (App3/Date:21.09.06): ‘An informal conversation about user

involvement in health research’}
Participants in the discussion agreed that there can be no doubt that there
is considerable scepticism within the research community about user
involvement. However, examples of professionally trained-consumers ‘at
the lab bench’ challenge preconceptions: ‘I had the condition so I did a PhD
about it’.
20
Figure 33: Ability to deliberate
Deliberative Process
(Habermas 1972)
(Bohman 1996)
Degrees of
accountability
Access to
knowledge
Social
environments
Understandings of
language
Knowledge of
systems
Service users who hold personal knowledge of a condition and are able to
practice research methods can take up the position of user-research. This
subject position is thought of differently as that of ‘professional researcher’.
A related and important point can be made about the relative deficit of sessions about
user involvement within established research training programmes. Although service
users are now often involved in the training of health care professionals, user
involvement has been relatively slow to appear within researcher training. This could
mean that learning about user involvement is not actively encouraged or prioritised.
Tilly's (1999) work on durable inequalities shows that ability to adapt is an element of a
sense of power. Tilly describes the capacity of dominant groups in society to exploit and
adapt to changing circumstances over time. As Truman and Raine have observed in the
context of user involvement in community mental health service development:
21
“the presence of user involvement at any level requires adaptation on the

part not only of organisations, but also users themselves, service providers
and non-involved users” (Truman and Raine 2002, p.142)
Training which equips service users and researchers to adapt may support a sense of
empowerment over and above learning about particular research methods. A point that
emerged from the interviews with researchers working in the area of palliative care in
Australia was the high degree of flexibility with which researchers worked with
individuals to make decisions about involvement in research. It maybe that engagement
issues may be somewhat different from other areas of health research because of the
health status of research participants and the extreme fatigue that some people suffer
however the advantages of researcher ability to adapt were well illustrated in this
context. Enabling engagement often meant making repeated visits to individuals in their
own home to plan participation with individuals. It involved communicating
expectations, explaining the research, and establishing whether the person wanted to be
involved. As illustrated by the following extract, researchers invested considerable time
preparing for participation and would approach this as an ongoing process rather than a
procedural hurdle often return on several occasions to continue the discussion if a
person was unwell.
(PARTICIPANT 5 - AUS): It has got to be useful and the patient has got to want to be involved.
I mean some of them say – no I don't want to do it – so you have to know when to stop and when
not to push, so it's not coercive. Because as a researcher you want that patient, you need them
for your research… But really the number of them that want to participate, and even if they are
sick and – come back tomorrow – that sort of thing, so it gives you hope that they do want to be
in it. It's not just me pushing them.
‘Potential to’
“The positions of the subject are also defined by the situation that it is possible
for him to occupy in relation to the various domains or groups of objects:
according to a certain grid of explicit or implicit interrogations, he is the
questioning subject and, according to a certain programme of information, he
is the listening subject; according to a table of characteristic features, he is the
seeing subject, and, according to a descriptive type, the observing subject; he
is situated at an optimal perceptual distance whose boundaries delimit
relevant information…” (Foucault 2006a, p.58)
22
‘What a researcher is' and ‘what a researcher should do' are social constructed by
discursive formations, so are the notions of ‘what a service user involved in research is'
and ‘what a service user involved in research does'. There is not a universally agreed
list of researcher or service user attributes, indeed people can be both. However notions
of ‘researcher' are created through job descriptions, person specifications, appraisal
systems, research assessment criteria and they are recreated through research
management, appraisal, training and so on.
“The legislators are familiar to us from every stipulative and normative text of
how to do science, particularly those written for the social sciences. How it is
to be done is through strict attention to rules and the external discipline of
being self-regarding in respect of one’s conduct according to the rules. One
will have the same regard for others who would be one’s intellectual peers as
they will have for one’s self, with respect to following these rules. For those
who play other games, one will have nothing but contempt or pity, depending
on how one rates their arrogance. It is participation in a hard and difficult
game…” (Clegg 1989 p.25)
“Part of the strength of science is that it has tended to attract individuals who
love knowledge and the creation of it. Just as important to the integrity of
science have been the unwritten rules of the game. These provide recognition
and approbation for work which is imaginative and accurate, and apathy or
criticism of the trivial or inaccurate … Thus, it is the communication process
which is the core of the validity and integrity of science”. (Abelson 1963,
p.1257)
However, findings in this study show that researchers are well aware that research rules
operate in particular ways and that their individual positionality can work for or against
them. The following example, illustrates that ‘Potential to' becomes a more complex
issue when collaborations and allegiances are taken into account.
(Participant 15: AUS) I certainly have to acknowledge that as a nurse I've had my advantages and
as a nurse I have had my disadvantages. Certainly when working with the medical profession, the
fact that my supervisor is a very well known psychiatrist is what has got us in. She has got a good
research history, she is well written up in the literature, she is known around the world. That
makes a huge difference about whether those ethics committees with consider us, particularly
working with a population that are so vulnerable. People are reticent to just allow anyone to talk
to people with a mental illness. She does that work all the time and so they have confidence in the
work that she has done. Also, my work on mental health in midwifery has been of benefit
because they can see that I am used to working with populations of women who are vulnerable.
My clinical nursing is useful.
23
Alternative meanings of user involvement in health research occur because practice is

subject to interpretation at the individual level within service user- researcher
relationships. Meanings of user involvement gain their characteristics, are built-up or
eroded through agreed concepts and experiences of what good practice constitutes. This
factor has previously only been alluded to in terms of an individual researcher's ability
to involve users. It has been approached as a question of researcher skills and capacity
rather than a question of how researchers formulate ideas about research practice and
enact these ideas through their own conduct.
Reference to existing rules of research practice frame what user involvement in health
research is. Extending or modifying roles risks being stigmatized or rejected by others
who align themselves with such positions. A situation that has been described by
researchers:
“We are not Luddites calling for an end to “blue sky” research, and we do not
want to see research by committee, but where the research relates directly to
patients and their experience of an illness it is essential that their opinions are
gathered” (Tallon et al. 2000b, p.381)
And by service user researchers:
“Nothing will change because the influential non-disabled academics are very
happy to continue working in this kind of unethical manner. This upholds the
status quo of the power imbalance between non-disabled academics and
disabled people with learning disabilities. However, I think that what is just as
bad is where disabled researchers show no concern about this, therefore giving
more support for these attitudes rather than challenging the barriers that
disabled people with learning disabilities face when wanting more control over
the research process” (Aspis 2003, p.5)
And by me during this study:
{Trigger (App3/Date:19.10.05): Interview with a senior academic in Australia

(Participant 7)}
[The participant] talks about the strange experience of being on the other
side of the tape recorder - she is normally the one asking the questions. I
make sure I follow my procedure for informed consent, anonymity and
breach of confidentiality because I feel that my practice will be judged. I am
glad that I have these procedures in place.
24
Some subject positions are awarded greater social status than others and therefore
represent positions of power. As illustrated by the previous reflective note about the
interviewer/interviewee relationship. In another interview with a senior academic
researcher the participant avoid taking up the traditional research subject role in a
number of ways. It was her choice to undertake the interview at a time she was driving a
car – a position of power in the context we were in; she was not keen to sign a consent
form but did so to placate my concerns about adhering to procedure. We had spent the
previous day together at the university and she had been kind enough to entertain me for
the evening at her house, a one hour drive into the forest. There had been ample time to
conduct the interview there. During the interview the participant takes on the role of a
self-reflective thinker. She makes it clear that she is the one asking questions of herself
thereby avoiding being tied to the logic of her own dialogue or the position of
interviewee.
{Trigger (App3/Date:20.10.05): Interview with a senior academic (Participant 8)}

The participant and I do an interview on the 2 hour drive in to Peninsula.
The participant chose to drive a car whilst being interviewed and to adopt a
reflective stance. Early in the interview the topic of conversation turns to
skills of qualitative researchers and the participant begins to reflect on the
experience of being interviewed during the interview. She suggests that she
is experiencing the interview as a way of reflecting on her own research
skills. I felt very conscious of the status associated with the role interviewer
and I change the way that I am posing questions to myself adopt the more
reflective style that she seems comfortable with. It is possible that the
participant sensed or predicted my discomfort with adopting the role of
interviewer. However, it could be that a reflective stance is part of
maintaining status. She adopts a reflective position early in the interview
and uses it to ask her self questions, an activity that is normally associated
with interviewer. She uses the role of driver, which is a subject position,
associated with control, to gain further status and to compensate for any
loss of status associated with being interviewed.
In another interview I undertook, with a senior academic, the participant began by

directing a series of questions to me about the study question, methods and approach.
The participant explained her questioning by stating that she was an experienced PhD
supervisor. Establishing her position in terms of supervision experience enabled her to
assert a position of status by contextualizing the interview according to her terms.
25
These examples illustrate how power is manifest through the knowledge and conduct of
individuals within any dialogue situation. Power can be expressed in the smallest and
simplest of actions. According to a Foucauldian view of conduct there are possibilities
for us as individuals to choose to follow, reinforce or replace existing discourses of user
involvement in research through the conduct of our own work and lives.
“The term ‘conduct’ is one of the best aids for coming to terms with the
specificity of power relations. For to ‘conduct’ is at the same time to ‘lead’
others and a way of behaving within a more or less open field of possibilities”.
(Foucault 1982)
The following reflective note explains how the simple act of using some people's first
names and not others reinforces positionality.

At the meeting there were discussion groups in the afternoon – following
the world café approach. The idea was that different groups of people from
different backgrounds would come together to share ideas about patient
and public involvement in research. Individuals were given name badges
and were assigned to a particular table. At each table there was a host. At
the particular table I went to the host made a point of welcoming
individuals with visible physical disabilities - ‘Hello Michael, please come
and join us – will you be ok sitting there?’ or those who were perceived to
be service users. Professional researchers were not greeted by name, they
were asked to introduce themselves. This small act of trying to make
service users feel welcome at the table created a sense that there was a
difference between service users and researchers.
For some people user involvement in health research is principally about questioning
the meaning of expertise. Becoming an expert could therefore be perceived as a counter
status position. To develop expert knowledge in this topic area and to attain
professional status for this could be perceived as living by the wrong rules.
{Trigger (App3/Date:07.10.06): INVOLVE Conference ‘People in Research’}

Expertise in this field is more accepted or credible if a person has personal
experience of service use. As a postgraduate student undertaking a study
about user involvement I have sometimes felt I lack plausibility because of
having a relatively normal health status. It is almost expected that user-
researchers will draw on their direct and personal experience during
discussions, whilst professional researchers are more likely to draw on
their personal experience of working with service users. Researchers speak
26
in general terms or about the experiences of others, for this reason their
views are rarely as powerful as the personal stories expressed by users
during discussions. Traditional researcher identities (objective and rational
rather than subjective and emotive) discourage the use of personal
experiences in the conduct of research. Researchers can find themselves in,
or are accepting of, a position which is more removed from experiences of
health, illness or service provision and consequently more removed from
what is regarded as a position of expertise in this field.

This topic is different from other fields of enquiry. There are different ideas
about what makes a person an expert here – a person who has achieved
action, a person who understands the drivers and origins of user
involvement, a person who has involved service users in research, a user
who has become research active. There are many possibilities of what
knowledge and expertise in this field could look like.
These views of expertise have interesting implications for concerns about top-down
control and professional control over research. Control over user involvement can not
be wholly organised in such a way that it is based on existing research values and
represented though membership of research institutions. Such a form of domination
requires explicit planning and organisation but it also requires researchers and users to
understand and abide by existing rules of practice. To be effective top-down control
requires that professional groups plan and organise and oversee implementation of user
involvement in health research, yet such mechanisms are not in place. The most
influential people may be those whose influence is the least identifiable.
‘Sense of being’
In this chapter I am arguing that understandings of user involvement in health research

can be extended by including a more critical exploration of the stimulus for intent that
subjectivity creates. Subjective experiences of power are approached here as involving
‘Ability to' ‘Potential to' and ‘Sense of being'. It is in this third component that the
most powerful stimuli for intent might be found: such as feelings of subordination,
superordination or reciprocity, being constrained, enabled, exploited, empowered,
consenting, coerced, conscious, unconscious of power. Power is expressed through
27
conduct and everyday practices. Subordination and superordination can become

normalized relationships. I have given the example of the interviewer/interviewee
relationship. Another example is ‘pyjamatization paralysis': the routine practice of
asking hospital in-patients to change into night clothes and get into bed whether or not
they require bed rest, which can lead to unnecessary dependency on healthcare staff.
Health care professionals and health researchers also become ill and they too may
experience a sense of loss of control or powerlessness. Positioning power is not always
a direct relationship, as experienced through this study:
{Trigger (App3/Date:03.08.06): Supervision, discussion of rejection of ethics

application}
In the world of health research particular players feel very powerful to me:
research policy makers, research commissioners, those in esteemed
academic positions, members of research ethics committees and so on. How
could I change anything for the better, even if I have something to say who
is going to listen?
A sense of being empowered may indicate that practice (the service user/researcher
relationship) has been successful or that service users have gained something from the
experience or impact of their own research. A sense of being exploited or coerced might
indicate the opposite. In the following quotations self-advocates from Swindon People
First and Norah Fry Research Centre describe their experience of research as a journey
to independence. The emphasis is explicitly on empowerment and creating knowledge
that is owned by users.
“Research is about people and power. You have to be really active to do

research, and do lots of work to find things out. But that’s good. People
believe in research, and that is why they listen to us … We want to do our own
research because it’s first-hand, and then we don’t have to learn from second-
hand research. It’s first-hand because it’s our own. Other research is clouded
by the fact that it’s done by professionals, it’s from their point of view, and
they’re effectively only guessing how we feel. Also, other research is very hard
for us to understand” (Snelham et al. 2002, p.5)
When perceived in this way power in user involvement in research is embedded within
our own consciousness to it. I have included the following quotation here because it
captures the issue of becoming conscious to power in the phrase “discovering new ways
28
of understanding ourselves and one another”: whether or not this is a route to freedom,
empowerment or any other sense of being is a matter of opinion.
“Freedom lies in our capacity to discover the historical links between certain
modes of self-understanding and modes of domination, and to resist the ways
in which we have already been classified and identified by dominant
discourses. This means discovering new ways of understanding ourselves and
one another, refusing to accept the dominant culture’s characterisation of our
practices and desires, and redefining them from within resistant cultures”.
(Sawicki 1991, p.44).
7.6 Judgement making
In this study few researchers perceived their implicit judgements about purpose to relate
to subsequent processes of user involvement or to their own conduct. Organisational
strategies and networks appeared to be important mechanisms for replicating ideas and
practices for user involvement.
Understanding tensions about control over research and what the underlying interests
and interests are requires extending understandings of user involvement beyond
classifications of service user-research relationships to incorporate the perspectives of
individuals involved. Hence, this section aims to build an understanding of how user
involvement in health research is constructed through the subjective judgements of
individuals. Such a perspective of user involvement in health research could be
informed by theory and empirical literatures on decision-making, for example from
treatment decision making or research priority setting. However, my focus here is issues
that emerge in relation to user involvement, including judgements I have made through
the study.
At least four types of judgement could be further explored in relation to user

involvement in health research. These are:
 judgements about the reasons for user involvement in health research (Purpose),
29
 expectations about how service user contributions will be gained and used
(Process),
 judgements about the impact of user involvement (Outcomes),
 judgements made through a research study (knowledge development).
The following section identifies three major factors which affect the subjective
judgements people do, or do not make, about user involvement in health research.
Pre-existing views and values
The first factor is that any judgement about user involvement in health research is
influenced by a person's existing views and values. For example the shifting objectives
of this study illustrate that my desire to show that involving service user in research
processes is achievable and adds value to research changed over time to a desire to
stimulate thinking amongst the research community about the subtleties of how power
operates in and around service user/researcher relationships. A broad shift in my views
about user involvement in health research influenced subsequent judgments about the
topic. According to reflexivity part of this dynamic is how the person sees themselves,
for example their status, credibility and authority to make certain judgements.
Personal-relational-social orientation
The second factor is that judgements can have a personal, relational and social
dimension. For example, a researcher selecting individual service users to be involved
in a project faces a decision that involves: a personal dimension, for example whether
they are likely to be able to communicate/work/engage with the service user; a
relational dimension, for example, whether this particular person might have something
to contribute and something to gain from being involved; and a social dimension, for
example the issue of whether the person is willing and able to represent the interests of a
group of people.
30
Ethical orientation
The third factor is that there can be ethical implications to the judgement itself and not
simply the consequence of a judgement. The person making the judgement can be aware
of the dilemmas or inconsistencies inherent in their views and the values that they award
to particular outcomes. Picking up on the three value positions of research identified by
Foster (2001) (discussed in chapter 3), these have been applied in the context of
palliative care research to show that the moral frameworks researchers use affect how
involvement is played out (Seymour and Skilbeck 2002). Whilst individual researchers
are unlikely to wholly adhere to a ‘rights-based' ‘duty-based' or ‘goal-based' ethical
framework, there are clear implications of these different ethical stances. Such as,
whether users are perceived as being active decision makers who are able to make their
own choices about participation and their own assessment of risks; or whether the
researcher considers duty of care to participants to override any duty to extend
knowledge and consider the research process as therapeutic to the participant; or
whether the researcher believes that the aim should be for the research to attain
maximum benefit in terms of the greatest applicability to the greatest number of people.
The three factors I have outlined are illustrated by the following figure. The figure
provides a way of approaching the problem of how to access intentions behind actions
to surface differences between the apparent intentions that underlie judgements about
user involvement and ‘real' interests. However, an obvious limitation is that judgements
can be made consciously or unconsciously (see discussion of elaborative and
elucidatory interpretation, chapter 4). Furthermore, this particular figure does not
incorporate perspectives about how individuals come together to make judgements.
The ideas I have presented here are developed in the discussion chapter in relation to
researching user involvement in health research.
31
Figure 34: Orientations of intent
Alignment with society through

Relational another or a group Social
What should we do? What should society do? How

How will the outcomes will the outcomes affect
affect us? society?
What is best for us in this What is best for society in
situation? Self this situation?
Pre-existing views and values
Personal sense of
status, credibility etc.
Personal alignment with

Personal alignment with
another or a group
society
Personal
What should I do? How

will the outcomes affect
me?
What is best for me in
this situation?
7.7 Thinking styles
Differences between ‘thinking styles' are important in the practice of service

user/researcher relationships and have implications for agreeing the best way to
approach a research topic. Although this study did not approach the issues from a
psychological perspective, it does help to show that the issue of alternative thinking
styles has relevance to the construction of meaning of user involvement in health
research and psychosocial approaches could therefore be very useful. The following
section highlights some of the main issues and discusses what they might mean for
knowledge of user involvement in health research.
32
Personal history
At a fundamental level each person carries memories of their own history which
influence who they are and how they think. The memories of their past make a person
who they are but they also influence a person's perspectives of the world. Whether we
perceive our thoughts to be reflective or not, our personal history and most significantly
the relationships we hold with our parents, our siblings or those we grew-up close to,
shape our everyday thinking about who we are and what we do. These powerful
assimilated understandings inform and shape what we do as individuals and the
identities we align ourselves with. Differences between thinking styles associated with
personal history have implications for user involvement in health research because
certain forms of knowledge are awarded value in particular societies and so are certain
ways of thinking.
A personal favouring and use of particular understandings of user involvement in health

research is likely to be influenced by the respect we award to the comprehensibility of
knowledge that is available to us. That is, different people may want to see robust
scientific evidence before they make a decision about user involvement whilst others are
more comfortable to act on other rational, such as their own experiences or the advice of
others. Indeed other factors to do with the consistency of knowledge are likely to be
significant, for example, whether the evidence appears contradictory. The succinctness
(concision) of the knowledge and the fit or harmony with existing knowledge
(concinnity) could also be significant.
Professional alignment
Alignment with a particular set of professional practices has also been identified as
having implications for the way people think, for example in nursing practice (Benner
2000). The French phrase, déformation professionnelle means a tendency to look at
things from the point of view of one's own profession and forget a broader perspective.
The implication is that, professional training results to some extent a distortion of the
way a person once viewed the world. From a research practice perspective, notions of
33
science and research cultures encourage researchers to distance themselves from the
object of enquiry, in an attempt to overcome their subjective experiences for example
using highly structured practices of randomization and controlled research
methodologies.
The existence of ‘professional' thinking styles is a view that is shared by other

researchers. Alvesson and Sköldberg (2000, p.288) suggest that researchers tend to use
particular thinking styles, as summarized below.
 Metonymy – atomistically (data orientated)
 Metaphor – symbols/meaning (hermeneutics)
 Synecdoche – systems and ideology (critical theory)
 Irony – ironical view (postmodern)
Reflective methodology aims to achieve a balance between these types of thinking
styles.
In this study the issue of different forms of thinking styles emerged explicitly during
one interview with a senior researcher in Australia:
{Trigger (App3/Date:24.10.05): Interview with a professor of nursing research}

The participant has extensive experience of interviewing and emphasises
the co-construction of meaning and feeding back to participants in the
research. We talk about involving people in identifying themes in
interview transcripts. She thinks that there are two main issues this raises:
the power difference that will always be present in the
researcher/participant relationship and, that researchers generally are
thinking conceptually rather than experientially. She suggests that
participants who are able to think both experientially and conceptually are
very useful to the research.
Other participants explained that working with service users stimulated them to reflect
on their own research practices. A conclusion that can be drawn is that to engage in
service user/researcher relationships or to study user involvement in health research is
likely to involve some form of reflection on the research methods and techniques being
applied. Greater awareness and reflection on personal thinking styles may help
individuals to surface and explore their own judgements and values.
34

The topic requires looking at research relationships. Investigators might
also be directly part of those relationships. They might be defined as a
researcher or a service user, but perceive themselves to be something
else. Scrutinizing a relationship that one is part of requires self-reflection
and self-awareness, both of the complexities of how one creates their own
identity but also the way in which it constructs the identities of others.

Some researchers at the meeting talked about user involvement as being a
philosophy or a way of being in the world. They said that user involvement
is ‘a process of realization’, with ‘no going back’, and ‘not being able to do
research any other way’. Why did these researchers talk like this? What
does the experience of undertaking research with service users do to their
thinking? Is it that user involvement makes researchers’ question their
personal ways of knowing.
Being a researcher does not necessarily make a person comprehend or reflect on their
personal philosophical view of the world or the way they conduct their lives. Research
practice is socially constructed and like any social practice those who practice it are not
necessarily conscious to the values which are implicit within it. Some researchers have
described user involvement as being a way of gaining insight into their own research
practices and ways of thinking:
{{Trigger (App3/Date:21.09.06): ‘An informal conversation about user

New types of interactions between researchers and users seem to trigger
reflective episodes and influence change in research practice. It was
suggested that in peoples’ everyday system worlds, user involvement can
be a way of thinking something you didn’t think before. The issue is then,
how to create a new possibility structure for thinking? There can be triggers
that budge or shock people into thinking something differently. What
makes a person stop and re-design the personal system they have used
every day of their lives? It could be a child running across a road, a major
incident, or a person fainting on a train. In the research world, small-scale
studies of participative enquiries can convince researchers to be more open
to other ways of thinking.
My own interactions with service users during research has certainly provided stimulus
for reflecting on my sense of being a researcher. The impact of such relationships
35
extends beyond the immediate interactions I have engaged in. For example, in
September 2006 I learnt that a service user that I worked with on the multi-method
review had died. She was a wonderful person. She had suffered from crippling arthritis
and could barely walk. I only met her in person on two occasions but she contributed a
huge amount to the project and commented on drafts of the final report. It felt as though
I knew her. I certainly knew I liked her. I mention her here because she was one of the
most supportive and encouraging people I have ever met. As a relatively inexperienced
researcher, rather nervous of working with service users, she made it incredibly easy for
me. She naturally saw people as people, rather than as ‘service users' or ‘researchers' or
by any other label. My relationship with this particular service user challenged my
views about what being a health researcher means.
36
Summary
 This chapter has been concerned with finding ways forward for knowledge
development about user involvement in health research. It began by looking at
current concerns to develop an evidence base for user involvement in health
research and suggested that it is important to consider the priorities, purposes and
perspectives that might be used to inform knowledge development in this area.
 There is also a need to consider approaches and methods that are used to develop
knowledge of user involvement. Some research approaches emphasise reason and
consensus which could overlook the productive potential of uncertainty and
disagreement. Progress towards better service user/researcher relationships should
include consideration of the benefits and drawbacks of such relationships for those
involved, for the research and for society.
 Context is vital, as without understanding the richer elements of service

user/researcher relationships it is difficult to locate existing knowledges or to know
the relative importance of particular issues or outcomes, for example whether user
involvement helps to bring about change in patient outcomes or to engage
healthcare staff in service development.
 Resistance towards user involvement in health research can be perceived as relating

to professional, systemic and paradigmic issues. Sites of resistance may offer places
from which to develop knowledge. For example, researcher resistance may be
attributable to resource and capacity issues but there are also important
philosophical and methodological dimensions to resistance which have not been
fully examined. Judgements about user involvement are made at the ‘micro'
(personal) level but they are also influenced by ‘macro' (collective) level
judgements. In some situations organisations and systems can work against
researchers and service users because of established processes and procedures.
Conventions and rules within health research can also present barriers for service
user/researcher relationships, for example research assessment criteria encourage
researchers to produce particular types of research outputs.
37
 Another place for knowledge development could be thought of as providing space

for manoeuvre. From this perspective ambiguity about the reasons for user
involvement is thought of as being a positive force that permits dynamic
relationships and ways of working to develop. At a project level knowledge could
be developed by capturing and acknowledging the diversity of service user
contributions, enhancing processes of preparing service users for involvement,
recognizing individual needs for continuing support (and/or care), incorporating
service user views, and educating the general public about user involvement.
Accountability structures for the reporting and assessment of user involvement in
health research could encourage the sharing of learning and reflection, but they
could also restrict or burden budding service user/researcher relationships.
Language development, epistemological stances and subjective experiences and
views are three mechanisms by which meaning making could occur permitting
notions of user involvement in health research to develop.
 On closer examination subjective experiences and views present three particular

avenues for knowledge development: experiences of power, judgement making, and
thinking styles. The first avenue helps to take forward discussions about
empowerment to approach user involvement in health research as involving ‘Ability
to' ‘Potential to' and ‘Sense of being'. This stance also helps to theorize how
individuals (both service users and professional researchers) make judgements about
research practice and enact these ideas through their own thinking and conduct.
38
Chapter 8: Discussion
8.1 Introduction
The discussion chapter begins with stating the crux of the interpretation and
summarizing the contribution of the thesis. The value of the contribution is discussed by
drawing on philosophical perspectives of validity and by comparing the findings to the
most recent and relevant research in this topic area, namely Boote et al's (2002) review
of consumer involvement in health research.
The second part of the chapter moves on to a discussion of the approach and returns to
the principles of a reflexive methodology which were developed in chapter 4 to identify
strengths and limitations. The discussion takes forward insights from the study to
develop a model for future research, presented in the concluding chapter (Chapter 9).
8.2 Crux of the interpretation
Current knowledge and conceptualizations of service user involvement in health

research tend to underplay the significance of external influencing factors such as
established notions of what constitutes health research. Although tensions about
professional power over user involvement in health research can not be escaped they
can be better understood by surfacing the reasons behind resistance and discomfort.
These reasons may be entirely valid, but where there is uncertainty there may be spaces
for manoeuvre though language development, epistemological stances and subjective
experiences and views.
39
8.3 Summary of contribution
Given the high level of political and commissioning interest in patient and public
involvement across the breadth of public services this study could potentially make a
worthwhile contribution to an area where there has been relatively little dedicated
research. By drawing on empirical data and theoretical perspectives the study helps to
establish the significance and relationship between particular types of issues and
perspectives. It achieves a sense of historical and conceptual order to current
understandings, which could help to moderate concerns about the rationale and
outcomes for this agenda. Framing the issues in terms of service user/researcher
relationships in social contexts is an important step towards expanding notions of user
involvement beyond conceptualizations of control within research studies.
New requirements for service user involvement in research raise context specific
challenges for researchers in establishing the best ways of involving service users. The
study helps to assess the implications of change in health research policy and practice
by putting forward the views and opinions of service users and researchers about how
this agenda is working in practice. By using theoretically informed and empirically
based analyses the study shows that understandings about user involvement in health
research have been influenced by established notions of what constitutes research,
encouraging particular forms of service user/researcher relationships to develop.
Making use of existing social theories of power, it has been possible to identify and
examine points of tension about user involvement in health research. The study shows
that although concerns about professional commitment and control over user
involvement in health research can not be escaped they can be better understood.
Whilst this study could not look in any great depth at the extensive range of contexts
health research comprises, the study does help to draw some general conclusions about
the professional, systemic and paradigmic reasons for resistance. It helps to move
thinking beyond an interest in who has access to means and resources, to raise questions
about how the rules of research practice and research systems affect what types of
relationships can occur. This work sets out a pathway for future work to develop more
40
detailed understandings about user involvement in the full range of health research
contexts. Although the study does not aim to set out a programme for future research, it
could usefully help to target future work in this area. By taking a critical perspective to
examining the basis for developing an evidence base, the study finds that knowledge
and the agenda for user involvement in health research could be significantly
strengthened.
Furthermore in view of the corresponding need to establish suitable ways to research

user involvement in health research, this study makes a significant contribution through
the development and testing of a reflexive approach. I will give this aspect of the study
specific attention in section 8.5 and draw together a model for future research in the
concluding chapter.
8.4 Value and validity
{Trigger (App3/Date:09.09.06): Discussion with a supervisor about what a PhD

requires}
The study is one of many possible interpretations. I face challenges of
defending what makes my claim to knowledge more ‘valid’ or ‘true’ than
any other interpretation. This is where philosophical debates about
interpretation are helpful to me. The findings are connected to other
people, knowledge and alternative perspectives. My interpretations are a
product of active processes of observation, discussion and reflection. This
connectivity is one of my claims to the validity and utility.
The overall value of the contribution is supported by the philosophical argument that a
successful interpretation is a preferred explanatory model and that disagreement
concerning knowledges ultimately concerns the status of the criteria used in determining
the value of interpretations across kinds (Novitz 2000). From this perspective the value
of this work can be determined from three perspectives; individual persons (such as the
reader), interpretive communities (groups, societies or cultures), or more generally as
contributing to an overall understanding of the world. Validity could be judged as the
value of the knowledge that is created. Individual people may gain knowledge from the
41
information drawn together and analysed in the thesis. For example, the information
may help individual researchers to understand why they might expect a planned
approach to user involvement in health research to change over time or lead to
unexpected outcomes. At the social level, discussion of how knowledge about user
involvement in research is being developed could usefully inform future research. More
generally value might be found in understanding how shifts in thinking at a political and
societal level frame social relations. Of course I have had particular audiences in mind.
As Jorge Gracia suggests:
“Fundamentally, interpreters want to make an audience understand something

about the object that is being interpreted, and therefore it is necessary to
understand the audience as well as the object” (Gracia 2000, p.43)
My understanding of the different potential audiences for the findings has developed
over time. Indeed, the different ‘knowledge-needs' of groups are central to the issues.
{Trigger (App3/Date:01.11.07): Supervision, discussion about implications of the

study}
Throughout the study I have kept in mind the implications of the research
for research practice and for research about National Health Services. The
implications I have drawn from the interpretation correspond with this
position. My opinion about potential audiences for the work has changed
somewhat over the study. I began with a concern for providing evidence to
researchers about user involvement in research, now I am more concerned
with stimulating thinking amongst the research community about the
subtleties of power. Power can be expressed in the simplest of actions or
through thinking about user involvement in a particular way.
The presence of multiple value perspectives and potential audiences means that multiple
successful interpretations could coexist (Gracia 2000). If an interpretation has value in
terms of understanding or developing approaches to user involvement then it is awarded
validity by those who find it useful. This was an issue that helped me to accept that my
claim to knowledge may not necessarily contest the claims of others.
{Trigger (App3/Date:23.02.06): Reading Novitz philosophy of interpretation}

By undertaking an interpretation I am suggesting the possibility of there
being less informed or lesser understandings of user involvement in health
research. Although I am not suggesting that some people’s views are less
valid, I am making a claim to knowledge, which is an uncomfortable
42
position to be in. What makes me any more informed that any other person
is the information I have gathered and the analysis I have applied.
Different interpretations of user involvement in health research will not necessarily be

competing, since their purposes could be different. It makes most sense to judge the
value and legitimacy of this work within the parameters of the kind of interpretation in
question. The way I will do this here is by discussing the work in relation to the most
recent and relevant study of knowledge in this field, the review by Boote et al. (2002),
introduced in chapter 3.
Boote et al. (2002) set out directions for future research in terms of four questions:
1) How can consumer involvement in health research be further conceptualised?
2) How and why does consumer involvement influence health research?
3) How can the influence of consumers on health research be measured and evaluated?
4) What factors are associated with ‘successful’ consumer involvement in
health research?
The findings of the present study corroborate Boote et al.'s assertion that
conceptualisations and models of consumer involvement in research are still in the early
stages of development. And, that whilst conceptualizations of levels of involvement
have been made, researchers interpret these differently. Boote et al. state that “the
boundaries between collaboration and consultation in particular are ambiguous,
suggesting the need for tighter definitions”. In this study taking a slightly different
approach to the issues shows that divergences between language and terminology create
opportunities for new practices to emerge. Building evidence of user involvement in
health research requires engagement with variation and ambiguity through language
development and more detailed description of service user/researcher relationships in
context.
In relation to their second question Boote et al. suggest that there is a need to explore
how and why consumer involvement influences health research by collecting evidence
from a variety of research settings, for example, Randomized Controlled Trials and
43
qualitative research and a variety of health research topics. The present study helps to
do this, but more importantly it helps to show that places of resistance and subjective
experiences of power in relation to user involvement in health research can provide
further avenues for knowledge development.
Both Boote et al. and I argue that the issue of the 'value' of service user involvement in
research needs to be addressed from the perspective of the research process and
outcome, acknowledging that interpretations of value may differ both within and across
service user and health professional groups. My use of theories of power helps to show
that it may not always be possible to access motivations (interest and intentions) behind
actions. This is not to say that commonalities may not emerge in the ways that service
users have influenced the research process and outcome. Is does mean however that an
element of the unknown and unpredictable will always be present within user
involvement in health research.
Boote et al's concern with how the influence of consumers on health research can be
evaluated and measured contains two related issues: (1) the measurement of consumer
involvement itself; and (2) the assessment of whether such involvement has any effect
(positive or negative) on research. They suggest that factors including “interactional
issues such as power and control” “need to be carefully measured in order to develop an
integrated interpretation of the influence of consumer involvement in a specific research
project”. Attention to power in this study suggests that power is not something that can
be readily measured because it is diffuse and embedded within both social structures
and subjective experiences. Power is lived rather than owned. In Boote et al's own
words “assessing how consumers influence a research project is highly problematic”
because of alternative views about research quality and the difficulties of drawing
generalizations across studies, as well as identifying the best way to collect outcome
data.
The fourth question that Boote et al. identify concerns the factors of ‘successful' user
involvement. They suggest that this question is concerned with “how and why, from
both the consumer and the health researcher perspective, such a partnership in research
44
can be made to work successfully”. The emphasis these authors place on achieving
consensus tends to suggest that what the majority of respondents are thinking or doing
at a particular time should become best practice. This emphasis does not readily
accommodate trends to perceive and relate to user involvement in different ways in
different research contexts. There is a potential for over simplifying the range of
professional groups, clinical activities, research methods, client groups and their
diversity of needs that research relates to. Even if general indicators of success can be
identified (Boote et al. suggest trust, reward, shared ownership, direction and style to be
important) the context specific and subjective nature of meaning suggest these should
be considered principles for practice rather than outcome measures.
The present study supports Boote et al's finding that “little attention to date appears to
have been paid to interpersonal, dynamic influences on the consumer/researcher
interface”. They suggest “an examination of the issues of motivation, power, influence
and control between the researcher and the consumer throughout the research process
will be particularly rewarding”. The study contributes to this endeavour by drawing
links to existing theory literatures. It adds breadth to current knowledge by locating the
issues in a historical socio-political context and acknowledging social
structural/subjective perspectives in knowledge development.
Boote et al. identify that much of the literature in the area is characterised by assertions
and value statements. The present study embraces this information as being essential to
the negotiation of service user-research relationships in social contexts, rather than
perceiving it as a deficit of definition about rationale or impact. The present study
places less emphasis on the examination of the impact of user involvement in health
research, rather it suggests that knowledge could be strengthened by exploring a wider
range of avenues about reasons for resistance, experiences of power, judgement making
and thinking styles. I will now go on to pay specific attention to the strengths and
limitations of the approach.
45
8.5 Discussion of the approach
Until now what user involvement is has been largely approached as a question of
definition and classification which tends to limit understandings to what has been done
within research studies. In this study Foucauldian perspectives have been employed to
approach user involvement in health research as being discursively constructed,
contingent and historically located. The Foucauldian notion of a system of formation is
useful to exploring socially and subjectively connected meanings of user involvement in
health research. Foucauldian perspectives help to expand understanding of user
involvement beyond classifications of service user-research relationships to incorporate
the perspectives of individuals involved and explanations of how current thinking
frames and facilitates what can be done.
At the same time there is a danger that a strongly Foucauldian-inspired approach to

researching user involvement might become a kind of theoretical panacea. The risk is
that the ideas will command the empirical materials too strongly (Alvesson and
Sköldberg 2000 p.230). The analytic tools I employed (system of formation and power
theory map, see chapter 4) helped to approach Foucault's work as a set of perspectives
rather than methodological imperatives.
A consistent feature of this approach was to perceive user involvement in health

research as an association of ideas and practices. My aim has been to show that the topic
can be approached not only as a matter of scientific evidence or policy making and that
conceptualizations and experiences of user involvement in health research are important
influences. Exploring these multiple perspectives clearly had implications for the depth
of insight that could be gained. There is a danger that in passing from one topic to
another, ranging over a wide field, a discursive approach becomes digressive. If I were
to tackle the same questions again – what is user involvement, what does it do? – I
would now be able to begin by acknowledging these alternative perspectives. However I
would not necessarily seek to explore user involvement in any more depth from any of
these particular perspectives. I would be interested in pursuing other perspectives of
46
knowing. For example economic perspectives of user involvement are important and
need to be considered in the context of existing models of health service research.
There were benefits to be gained by combining reflexive methodology and Foucauldian

perspectives in one study. Both encourage an exploratory attitude and methodological
freedom whist stimulating critical reflection. Foucauldian perspectives of discourse
suggest a way of mapping the history of ideas and deconstructing apparent truths, whilst
reflective methodology encourages the researcher to explore the issues behind apparent
tensions in meaning and practice. Foucauldian perspectives help to show the limits of
reflectivity, and reflectivity sheds light on the view of discourse that has been applied.
The use of reflective methodology directed attention to judgements made through and
about the study: which in any study of professional power, knowledge development or
research relationships seems wholly consistent. However, reflective methodology can
not “dissolve discourse” (Parker 1992) or escape being part of discourse itself.
Reflectivity can never be a value free process of reflection on knowledge development.
For researchers like me who are grappling with how to identify or show the ethical and
political implications of their judgements, Foucauldian perspectives combined with
reflective methodology can provide a useful degree of direction that expands beyond
any one methodological approach.
Although Foucault's work remains ground breaking his ideas are historical. It is
therefore important to consider these perspectives in relation to contemporary
understandings and concerns about health research. In theory particular concepts of
power can be more powerful than others. Ideas of power are themselves powerful and
contemporary. Through user involvement the public appear to be more knowledgeable
of the power held within research systems. This is reflected by changes in popular
discourses of power. For example, what would Foucault make of ‘Girl power' made
famous by the Spice Girls in the 1990's, or the seasonally-dependent ‘pester power' of
children? What would he have to say about the power of the ‘pink pound' or the power
of the concept of a ‘carbon footprint'? These concepts of power are not only used to
describe social structuring but they are understood and used by society to bring about
47
change. Theories of power are readily available for public consumption and the public
have the choice which they will align with.
Foucault's ideas about power were conceived of in relation to a particular understanding

of the human body. His work on biopower showed that the body was to be managed
and improved. A contemporary interpretation is ‘letting die' and ‘making live' (Rabinow
and Rose 2003). However, in the age of the molecularized body “the future is less about
care of the self than it is about imminent catastrophe” (Braun 2007). Advances in
genomic medicine and genetic testing could mean that understandings of health (Rose
N. 2001), and therefore user involvement in health research, witness a substantial shift
towards predicted diagnoses at the ‘bedside' (Wainwright et al. 2006). Together with
current trends to assess the quality of both health and health research according to
effectiveness outcomes, it seems likely that research will be there to define the norms of
a predictive genetic society.
Foucault's theories were also devised in a different technological age. Through

electronic media power can operate on an unprecedented scale which can be
instantaneous and global. Concerns about population migration, identity fraud, housing
crises, avian influenza, global warming, healthcare associated infections, and so on can
be transmitted across nations in an instant. Contemporary global issues appear to create
super powers with super sized consequences. It is uncertain whether our sense of the
magnitude of power has changed over time or whether as individuals we feel more or
less powerful. There is something about the size of global issues that appears to take
concerns about power to an entirely new level. Globalization demolishes the idea of
sovereign power, not from the perspective of diffusion of power through society, but
from the sense of omnipotence of power beyond humanity. In this high-speed 24 hour
medium the appearance of power is a blur. Near instantaneous exchanges of electronic
information mean that to human eyes power can appear in two places at once. Power
shifts appear to be closer to the realm of quantum physics than the steady reign of the
sovereign.
48
Theories of power must enter online social networking spaces. In ‘Myspace power' user
involvement is free from professional control. Power is manifest through the articulation
of patient (and staff) stories in chat rooms, blogs, on Facebook, Myfriends, and so on.
Service users do not need to wait to be asked to express their opinion: they can post
their views where professionals can see them. In this virtual space the emphasis shifts
from one of being invited to participate in research to a situation where anyone can
create their own knowledge. The focus of the question is now not – who can create
knowledge – but – what will knowledge do?
As a space for knowledge development the Internet appears to circumvent issues of who
is involved, yet it generates new types of representation issues. If everyone has free
access to express their views then representation becomes a question of selection and
interpretation of information. There is of course the issue of who has access to
information technology and the skills to use it, but more fundamentally there is the
question of the way in which knowledge generated through the internet can be used.
People putting information on the web have virtually no control over who can accesses
information, whether it is replicated or modified. The principle of consent familiar in
real-research no longer applies in a virtual forum where people are able to create and
share information quickly and widely. Such a situation raises new questions about the
Foucauldian claim that surveillance is an effective tool of governance: in this world it is
only possible to know the disclosed identity of the person who has entered the chat
room. Within a virtual world virtual citation practices are possible. The consequential
power relations may be real and dangerous.
Furthermore in ‘Myspace Power' the propagation of statements is less dependent on

physical human interactions. Perhaps Foucault might have agreed that information
technology as a power of consciousness that goes beyond humanity and life, in the
sense that it could theoretically exist independently of any human entity. Perhaps
Foucault would have felt that we are at a point in history when life is no longer
prerequisite to the articulation of power, he suggests “man is an invention of recent date.
And one perhaps nearing its end” (Foucault 2006b, p.422). Resistance is not solely the
privilege of humanity. Technology supplies mechanisms for the customization of
49
knowledges. It offers simulation and the production of virtual realities. It permits

personal production of personal knowledges, for example offering the consumer the
choice for genetic cross checking with potential reproductive partners. The implications
of these issues for the approach developed here is that Foucauldian perspectives of
discourse may fail to accommodate the rapidity and virtuosity of the creation of new
knowledge about health research, or indeed the role of artificial intelligence in the
creation of discourse.
A further limitation is that the study is a product of a particular time (illustrated by

figure 35). New concepts, themes and statements are continuously becoming available
about user involvement in health research and about how it can be understood. Any
perspective of history is influenced by existing understandings. A discursive approach
helps to move from perceiving user involvement in health research as a synchronic
phenomena (existing now) to a diachronic (existing and changing over time) network of
concept themes. From this perspective any meaning of user involvement in health
research changes as new understandings are reached and the norms that allow us to
evaluate and judge user involvement in health research are themselves contested and in
transition (Chimisso 2003).
Figure 35: Time perspectives
A Study timeline B
Study perspectives
Preconceptions Historical Contemporary Prediction
Pre-concepts Defined object
Concepts / themes / statements

Non-discourse
50
It is also important to ask what type of histories have I created here? In part the study is
a ‘recurrential analysis' (Chimisso p.300), as it can be located within a scientific
framework, testing theory and replication of ideas. The structured review and
stratigraphic perspective, presented in chapters 3 and 7 respectively, create an
‘epistemological history'. These positions are necessarily concerned with “opposition of
truth and error, the rational and the irrational” (Foucault 2006b, p.406). The
constellation of concepts presented in chapter 5 is an ‘archaeological history' which
aims to “abandon the normative point of view and, as a consequence the concern with
the distinction between scientific and non-scientific forms of knowledge” (Chimisso
p.300). Combining these perspectives helps to raise our consciousness to the knowledge
frameworks we operate within and the way we approach issues about user involvement
in health research.
{Trigger (App3/Date:19.06.07): Supervision, discussion of user involvement}

In the last few months I have felt that my understanding of user
involvement in health research presents me with a serious challenge in
terms of perceiving and conveying the implications of this understanding. I
can not predict how the work might be played out in different research
processes, structures, organisations, or networks or whether any change
will be attributable to it. Furthermore, would it be possible to translate
these insights into meaningful messages that relate to decisions facing
research policy makers, commissioners, researchers themselves let alone
the publics they do or do not aim to work with?
Taking these points together, there is a strong argument that knowledge of user
involvement in health research needs to be developed and modified to accommodate
new concepts and terms and new ways of approaching the issues. The next part of the
chapter discusses how reflexive methodology can help to do this.
51
8.6 Returning to the principles of a reflexive methodology
In this part of the discussion I will revisit the principles developed in chapter 4, to
examine some of the strengths and limitations of such an approach to understanding
user involvement in health research.
Principal 1 - Systematics and techniques in research procedures: The study should

follow some well-reasoned logic in interacting with the empirical material, and use
rigorous techniques (for example grounded theory, ethnomethodology and inductive
ethnography) for processing the data.
Given that the principal aim of this study was to explore what user involvement in
health research is, it was appropriate to use an approach that was capable of building
understanding about alternative meanings. Whilst I have argued that little induction was
necessary to create the data, considerable time and energy was required to observe and
document social situations and information. There were two major methodological
issues to deal with: gathering information to inform a continual process of analysis and
recording what that information was.
{Trigger (App3/Date:19.09.05): MPhil/PhD transfer viva}

The breadth of the topic area has been a practical difficulty. It is only
possible to pursue some of the issues within the field. The topic spills into
political, moral, philosophical, ethical, economic lines of enquiry. It could
be investigated according to a wide range of disciplines, for example:
psychological, psychosocial, sociological, political science. User
involvement in health research could be interpreted in relation to theories
and practices borne out of any of these domains; such as theories of power,
knowledge, democracy, scientific method, participation, regulation,
governance, social welfare, liberty, and so on. The breadth of the topic has
also helped to maintain my interest in the research. The topic raises
fundamental questions and issues that almost anyone can engage with.
There are clearly issues about the degree of precision and sensitivity to the issues that
can be achieved in an empirically informed analysis of discourse. Arguably, a purist and
positivistic approach would produce findings that were more reproducible. However, I
chose to tackle questions of meaning and knowledge development which could best be
accommodated by a Foucauldian inspired interpretive approach. As Alvesson and
52
Sköldberg (2000 p.33) argue, a positivist methodology focusing wholly on the data,
could not reach down to the deeper structures in the empirical material it would be
“shackled to the surface structures”. The sense of constraint was an important driving
force for seeking a more encompassing epistemological position:
{Trigger (App3/Date:23.09.06): Conversations with a supervisor about research

methods}
If, I accept that I am constrained by the structures that I seek to understand.
Would it not make sense to abandon this line of enquiry (interpretation) in
favour of an established experimental method: to make use of established
methodological rules. But, this PhD is about those very structures. Am I
getting too into philosophical territory? If only I could take a step back and
undertake a controlled experiment of user involvement.
Given more time it would have been useful to draw from the work of Erving Goffman
(1959) the idea of the presentation of self in everyday life and apply it both in the
diagnosis of the disconnected researcher as well as the notion of meaningful research. I
could have made use of the work of Pierre Bourdieu (1977) to explore how the social is
internalized, carried and applied by individuals in the judgements and practices they do
or do not make. Similarly, I could have used Etienne Wenger's (1998) communities of
practice to consider how a shared repertory of resources can help to negotiate meaning;
a perspective that would be particularly useful for probing differences in meaning
making structures within different types of research organisations. It would also have
been useful to look at how social reproduction theory can be used to examine change in
research practice (Gerwitz and Cribb 2003). At the end of the study I am able to
perceive the utility of such perspectives.
Principal 2 - Clarification of the primacy of interpretation: The study is

fundamentally an interpretive activity. It is driven by an interpreter – who interacts
with and contemplates other interpreters. Thus method cannot be disengaged from
theory and other elements of pre-understanding, since assumptions and notions in
some sense determine interpretations and representations of the object of study.
Paying attention to symbolic and embedded meaning is thus an important form of
reflection.
In circumstances where I actively approached individuals about their views on the topic,
interviews and discussion groups for example, my positionality as a researcher was
defined by the processes of the research, such as recruiting, consenting and interviewing
53
participants. However, a discursive approach to data collection raised ethical issues of

distinguishing between my position as a researcher and other identities I may align/be
aligned with such as colleague, delegate, service user, and so on. Wiles et al. (2008)
suggest that regulation of research needs to enable researchers to attend reflexively to
the social context in which consent takes place. My experiences support this view and
as I will go on to explain reflexive methodology, supervision and peer support were the
mechanisms through which reflexivity could be put into practice.
The importance of positionality was also evident in the alternative forms of

communication that influenced the data that was collected. In general, face-to-face
discussions with participants achieved a much greater level of communicative
interaction than through the use of email or reading papers. It is likely that data
collected through conversation methods had greater influence in the analysis and even
more so over time.
{Trigger (App3/Date:01.09.07): Discussion with a colleague about participants in

the study}
During the study I have met people for whom user involvement is
important. Certain people or interactions have left an impression on me
and I have tried to record who and how. Further along the path of the
study I increasingly find myself in places where people support user
involvement, rather than places where people do not. This is mainly
because I am becoming ‘networked in’ because of my growing knowledge
of the topic.
Quandt et al. (1999) argue that if researchers are to dialogue with a community they
must obtain the trust of its members, termed community entrée, and that establishing
trust is a social event which demands that a person's political, social and economic ties
are known. For me community entrée involved identifying key people and arenas where
user involvement was being discussed. It was part of the exploratory nature of the
research work.
{Trigger (App3/Date:19.10.05): Interview with a senior nurse academic in

Australia (Participant 7)}
54
I am making decisions about each stage of the study as they emerge: on a

day-to-day basis, seeking to interview people that I think might have
something different or important to say about the topic.
Reflective methodology provided a way to look at elements of dominance in lines of

interpretation including my role as an active constructor and the presence and
positionality of other constructors. The identities I was using had positioning affects and
could create different responses in participants in the study. For example, sometimes it
was beneficial to introduce myself as a PhD student rather than a research associate
when talking to researchers because they would often offer advice about the study. On
other occasions it was more beneficial to use markers of academic status to facilitate
interactions, for example by citing the credentials of my supervisors, relationships with
colleagues or my position within an academic institution. Drawing on particular subject
positions allowed me access to different resources. For example, by being a
postgraduate student at King's College London I could access research funds and
courses.
{Trigger (App3/Date:22.10.07): Preparing for a presentation about aspects of the

research undertaken in Australia}
My personal characteristics and circumstances have affected the study.
Research has shown that in an interview context gender, age and ethnic
background can affect data collection. It is difficult to know whether my
personal characteristics might have hindered my access to other forms of
empirical data – what I was able to observe and situations I could gain
access to. In terms of my personal circumstances I was able to travel
around the UK, to Japan, Australia and China during the time span of the
study, which certainly provided stimulus for my thinking. These journeys
might not have been possible if I had caring responsibilities, a physical
disability or if English was not my first language.
It was not only my positionality that was influential. How participants positioned
themselves (discussed under principal 3), the supervisory relationship and peer support
were also important. The supervisory relationship was a resource for thinking and
comprehending questions raised through the study, particularly issues about knowledge
construction. A flexible style of supervision gave me permission to explore and reflect
upon issues about the study topic and approach. Other researchers have used interviews
amongst members of the research team as “a concrete procedure through which to
55
examine a key reflexive issue” (Bolam et al. 2003, p.8). The advantage of supervision
above peer-reflexivity is that it may be easier to negotiate confidentiality issues and
avoid a fixed representation of the researcher role. At the beginning the focus of
supervision was on developing my skills but this later shifted towards supporting study
design and data collection and then to the development of a thesis. In the later stages of
the supervisory relationship we challenged each others' thinking, compared our
perceptions of the field, tested and reworked our understandings of user involvement
and in doing so established some of the limits of the work.
{Trigger (App3/Date:01.10.07): Supervision, discussion of influence of the

supervisory relationship}
One element of the supervisory relationship that has remained constant is
that both supervisors have reminded me what is expected from a PhD
study. They have helped “keep me on track”. They have persuaded me to
remain within the boundaries of what is required. This concern for
boundary setting was not purely for my benefit. There was also a feeling of
needing to protect their reputations as supervisors. This point was openly
discussed and I agreed with it. My supervisors expressed a sense of feeling
responsible to ensure that the study is recognisable as fitting with the
‘template’ for a doctoral study. For me this concern has reflected what I
have found throughout the study – that at the edge of accepted social
practices there is a narrow margin for difference, or innovation.
Subtle differences in each person's thinking have become more apparent as we have
gained a greater depth of understanding of the issues and our views about them. Fiona
tended to approach the issues from the perspective of professional practice, drawing on
her own experiences of research on interprofessional teams. Trisha introduced theories
of reasoning and drew on her experiences of researching and caring for people with
severe wounds or skin conditions. I was more likely to talk about ideas from social
theory and my experiences of being in the field of user involvement in health research.
{Trigger (App3/Date:01.10.07): Supervision, discussion of influence of the

supervisory relationship}
My reflexive approach has included the influence of my supervisor’s
actions and expressed opinions on the study. Fiona and Trisha have
supported my decision to expose a relationship that would generally
remain hidden within a PhD thesis. Although they have expressed
relatively few concerns about how they are represented in the text, where
56
these have been raised they are because of differences in our views about
the meaning of particular words or phrases that I have used in relation to
the supervisory relationship.
In an analysis of their own supervisory relationship, Li and Seale (2007) suggest that the
relationship is symbiotic in that it carries social meaning.
“Through the strategies of foreshadowing, advice-giving, repair, humour and

politeness, a symbiotic cordial relationship is collaboratively developed and
sustained” (Li and Seale 2007)
My experiences and the experiences of others suggest that a strategy for supervision
must encompass linguistic sensitivity in critical reflection. This approach does not
simply mean using words of encouragement and praise it is about using language to
appropriately pitch criticism. By way of illustration, in the first year of the study my
supervisors used phrases such as: ‘For a first draft this is…' ‘In the first year I would
expect …' rather than addressing my performance according to the stands required of a
final thesis. Consequently I felt encouraged to do even better rather than demoralized by
insuperable difficulties. It was also encouraging that Trisha and Fiona used language to
position their criticisms as a helpful forewarning rather than a direct criticism. For
example, using a phrase such as “With my examiner's hat on I would want to know …”
was a way of suggesting a modification that could equally have been expressed as a
direct criticism. My supervisors used phrases such as “If I was reading this cold …” and
“If I was part of your audience…” to explore how a particular term, statement or claim
might be understood. It was also significant that we shared critical reflection on matters
other than the topic at hand. Such discussions supported contextual reflexivity about the
research organisations we were working within, trends in health care, professional
education, research funding, research ethics and quality criteria for research assessment.
My relationship with other colleagues was also an important trigger for reflexivity. I
have already explained that my relationship with three colleagues (Dr Catherine Evans,
Sheila Donovan, and Louise Jolly) as part of an informal PhD support group was
important for discussing practical and ethical issues. Although our studies varied in
topic (district nursing services in nursing homes, falls prevention, homelessness) we
57
shared an interest in how meaning of health and illness are socially constructed and our
own positions in this process. Our thinking was supported by Dr Janette Bennett, whose
own PhD study was on mother's experiences of caring for a child with attention deficit
disorder. Because of career changes and personal circumstances it has not been possible
for us all to meet together in the last year. Our experiences illustrate the difficulty of
maintaining a peer-support network even if the commitment is there.
Principal 3 - Awareness of political-ideological character of research: The study is a

social phenomena embedded in a political and ethical context. What is explored, and
how it is explored, can hardly avoid either supporting (reproducing) or challenging
existing social conditions. Different social interests will be favoured or disfavoured
depending on the questions that are asked (or not asked), and on how reality is
represented and interpreted. Thus the interpretations and the theoretical assumptions
on which these are based are not neutral but are part of, and help to construct,
political and ideological conditions.
Although my intention has not been to change user involvement in health research,
according to the philosophical perspectives of interpretation and principles of reflective
methodology which inform the study, it is not possible to avoid doing so.
{Trigger (App3/Date:10.04.07): Discussion with a colleague about the topic of the

research}
Colleagues and several participants in this study have asked me – what am
I trying to show? I have taken this to mean all research has an agenda and I
should be clear about mine. It has taken a long time to recognise that my
work to building knowledge of a particular set of ideas and practices - user
involvement in health research – does not mean that I must defend or
attack such practices. It has taken some time longer for me to realize that
the assumptions that I bring to the study may have similar if less explicit
effects.
In making an interpretation this study changes user involvement in health research in

four ways. The study idealizes user involvement in health research, reducing it to core
concepts or ideas that are used for the purpose of thinking and description. Secondly,
user involvement in health research is re-segmented, to break down the object in order
for it to be understood. Thirdly, I have reconceived user involvement in health research
as being socially and subjectively constructed to achieve new understanding. Fourth, the
‘underlying' object is recovered by applying the new understanding to the original
58
object. Paul Thom argues that these four ways of altering an initially given object of
interpretation, are “far from being symptomatic of either intellectual weakness or
duplicity, they are an intrinsic part of interpretation and they contribute to its positive
value” (Thom 2000, p.63). Although these perspectives position interpretation as a
social act with social outcomes, this differs from a critical theory perspective which is
characterized by an interpretive approach combined with a pronounced interest in
critically disputing actual social realities (Alvesson and Sköldberg 2000).
Part of the reflective approach was to attempt to show the political and social
constructions that shape the research study. Through the use of reflective notes I aimed
to make clear the decisions taken at each stage of the research and explain lines of
enquiry that were not pursued and the reasons for this. I tried to bear in mind the
factors, barriers and opportunities that had led me to certain decisions; particularly the
ethical and political questions encountered in the research process. I have explained that
a rejected ethical application was a key influence on this study. There were further
ethical and political issues associated with adopting an engaged approach. As I have
previously explained, researching research-aware individuals created challenges as
participants held powerful views about ‘what a researcher is' and ‘what a researcher
should do' (see chapter 7). Other research with researchers has shown that a formal
consent process can be perceived as being inappropriate and off-putting (Wiles et al.
2006). My approach aimed to provide a view of user involvement in research practice
from the inside out hence it was useful to draw on ethnographic methodology.
Observational and qualitative methods allowed a detailed engagement with the practical
contexts, standpoints and choices of agents:
“It is not just that the social world is complex and in flux, it is that we can
ultimately only make sense of it, so to speak, from the midst of it.” (Gewirtz
and Cribb 2003, p.247)
However, the ethical issues involved in striving for an emic engaged perspective meant
that the empirical data comprised statements being made in public places rather than
judgements being made privately. There was an ethical tension associated with
observing particular statements or comments and not being able to treat them as data.
59
The notion of statements rather than ‘that which is said' was a useful analytic tool
because it allowed me to discuss issues rather than the private views of individuals.
Consequently it is likely that this study reveals more of what is said and done in relation
to user involvement in health research, than what is not said or not done.
{Trigger (App3/Date:01.09.07) Discussion with a colleague about participants in

the study}
Undertaking this study alongside my research job has been incredibly
useful for accessing another perspective of user involvement in health
research: that of relative disinterest and misunderstanding. On a day-to-
day level of enquiry my position as a researcher within an academic
institution became more and more important for testing out
understandings I was developing. In particular, it allowed me to see how
values upheld by policy through research governance, science and society
are used as frameworks to comprehend user involvement in health
research. Talking to people outside of the research community was
important for gaining perspective about the significance of user
involvement in health research compared to people’s concerns about
health and social issues more generally.
Principal 4 - Reflection in relation to the problem of representation and authority.

Texts affect one another, they become split or fragmented. In this way both the
author’s claim to authority and the texts’ claim to reproduce some extrinsic reality
are equally undermined: the researching subject and the researched object are both
called into question.
Given that the data are interdependent and co-existent it was particularly difficult to
classify particular pieces of information, ideas and texts as being empirical or reflective.
It proved more useful to sidestep this issue by identifying the reflective themes of study
and explain how these themes are interrelated with the data. Hence the statements that
characterise the interpretations being made are not easily attributable to any one source,
event, or person's thoughts. Furthermore, the study itself was influenced by the
participants within it, as illustrated by the following reflective note.
{Trigger (App3/Date:19.10.05): Interview with a senior nurse academic in

Australia (Participant 7)}
[The participant] asked me to define what my PhD question is. I struggle
to give a concise answer. I haven’t perceived of the research in terms of a
research question and the title I have for the work is not one that I will stay
with. I talk about the idea of organisational readiness and trying to gain an
understanding of the range of issues at a policy, organisational and
60
personal level. She asks me about the method I have chosen. I talk about
using mixed methods and using phenomenology to find range of meaning
and understanding in the first phase of the research. In her view this is
‘methodology’ not a ‘method’ and that perhaps a feminist method might be
appropriate. I don’t know what she means. Once again I am acutely aware
that I am interviewing someone who is judging what I am doing while I am
doing it. I am uncomfortable with this open critique, but also grateful for
the perspective on my work because it is challenging me to think in a
different way.
Reflectivity meant paying attention to the dynamics of interactions and questions raised
in the context of data collection. Previous authors have argued that researchers should
not disregard such questions:
“It is the very messiness, the apparently awkward questions from the
researched which are desirable; it is these questions which should not be
written out of any research report precisely because they can provide a
starting point for the analysis of power between researchers and researched”
(Bhavnani 1990, p.142)
A reflexive stance encouraged me to consider the judgements I was making and the
triggers for them. Yet, there were no epiphanies or eureka moments. The process largely
involved rearranging my pre-existing views in the light of new information: a process of
cognitive discursive construction embedded in my understanding of language.
{Trigger (App3/Date:30.10.07): Discussion with a colleague about epistemology}

The observations I have made only become data when they are recorded.
What I observe must be conveyed to others for it to be recognized as
having meaning. Until observations and ideas are brought into the world
through language they only exist to me. The information is itself
influencing the way that I am mentally processing new information. It
helps me to shape the framework through which I am processing
observations. Rather like putting a jigsaw puzzle together and finding the
instructions for how to put it together written across the pieces.
The process of constructing an interpretation was linked to my capacity for thought. I

have certainly been aided by the thinking of others - previous authors, supervisors,
colleagues, participants and so on. Yet there was no computer programme or
computation machine to help me run thinking tests and there was no way to step outside
my own pace of thought. Reflexivity helped me to examine my thinking style but it also
detracted thinking time away from the topic at hand.
61
{Trigger (App3/Date:16.12.07): Writing the introduction to the thesis}

If I were to begin this study again I would be starting from a very different
position. I would bring a more refined set of research skills to the study. I
would be able to read selectively, process information quicker, and write
more intelligibly. I would bring with me more knowledge of philosophy
and epistemology. I would have access to a network of people who are
engaged and knowledgeable of the issues. I would be better equipped to
build reflection into the study from the outset. Most importantly I would be
more inclined to question the concepts that I draw upon and to take a more
structured approach to reflexivity.
62
Summary
 The crux of this work is that currently available research and conceptualizations of
user involvement in health research tend to underplay the significance of external
influencing factors on service user/researcher relationships. Concerns about
professional ownership of research can not be escaped but they can be better
understood, for example by exploring reasons for resistance and mechanisms for
meaning making, including language, epistemology and subjective experiences
and views.
 The study contributes a sense of historical and conceptual order to current

understandings which could help to moderate concerns about rationale and
outcomes. It has proved useful to approach user involvement as relationships in
social contexts rather and to expand notions of researcher power beyond who has
control over research budgets. Here, I have set out a pathway for future work to
develop more theoretically informed understandings about health research practice
in context.
 When this study is compared to leading research in this field (Boote et al's 2002
review of consumer involvement in health research) a number of conclusions
about the validity of the findings can be drawn. The findings of the present study
corroborate Boote et al.'s assertion that conceptualisations and models of
consumer involvement in research are still in the early stages of development. I
have suggested that building evidence of user involvement in health research
requires engagement with variation and ambiguity through language development
and more detailed description of service user/researcher relationships in context.
This study helps to explore how and why user involvement influences health
research, but more importantly it helps to show that places of resistance and
subjective experiences and views can provide further avenues for knowledge
development. Attention to issues of intention, influence and control in this study
suggests that power or empowerment can not be readily measured and an element
of the unknown and unpredictable will always be present within user involvement
in health research.
63
 Trends toward public involvement in policy and practice mean that data are
available for research on this topic. However, like any field of research there are
practical, conceptual and ethical limitations which this study helps to identify by
combining Foucauldian perspectives and reflexive methodology. A discursive and
interpretive approach provided a useful degree of direction and a stance to analyse
and assess the data. Reflective methodology provides a way to look at elements of
dominance in lines of interpretation, including me as an active constructor of
meaning, the supervisory relationship and participants in the study. It is possible
that a strongly Foucauldian approach could overshadow the empirical data. The
tools I have developed here (a system of formation and a power theory map)
helped to approach Foucault's work, and the work of others, as a set of
perspectives that were very useful for organising the data and for inspiring me to
approach the data in new ways (as a constellation of concepts and a stratigraphy of
knowledge). Foucauldian perspectives then became useful for reflecting on the
type of histories have I constructed here and the need to assimilate new concepts
and ways of approaching the issues in any research endeavour.
 The breadth and complexity of user involvement in health research could mean
that it is difficult to achieve a high degree of precision and sensitivity to the issues
in anyone research study. I have drawn selectively on the data and on the work of
particular social theorists to examine certain tensions. Given more time it would
have been useful to draw on the work of other social theorists to examine how the
meaning of relationships is reproduced. My own positionality, relationships with
colleagues and the supervisory relationship have offered some insights into these
processes and the political and ethical context of the present study.
64
Chapter 9: Conclusion
9.1 Introduction
In the previous pages I have developed an interpretation of service user involvement in

health research. The interpretation draws attention to the transient nature of service
user/researcher relationships and the personal and contextual significance of successes.
It shows some of the places and ways in which tokenism can operate and brings to the
fore some of the life changing experiences and judgement values that shape thinking
and practice within this field. The study sets these understandings within historical
socio-political contexts and draws links between service user involvement and concerns
about recognition of public interests in public services, efficiency and responsiveness to
users, rationing and priority setting, quality and safety, and pluralism. By drawing
together data about these issues, analysing and theorizing I have developed an
empirically grounded model for exploring judgements about user involvement in health
research, presented later in this chapter. The model helps to reveal eight types of
framing knowledges within which issues about user involvement in health research can
be perceived and explored. Before then I will summarize the main substantial findings
and consider the wider implications of the study for policy, research and practice. I end
the chapter by drawing three overall conclusions about user involvement in health
research.
9.2 Summary of the main substantive findings
Relatively little research on user involvement in health research exists and current
conceptualizations underplay the significance of external influencing factors
 Overall, relatively little research on user involvement in health research exists, in

so far as it is represented by published accounts of research in peer reviewed
journals. The volume of research activity seems to be disproportionately low given
the degree of political interest in this topic and commissioners requirements for
user involvement in health research. In addition to low volume, the scale and
65
some of the quality of the research base is also limited in terms of the possibility
for generalising findings or making comparisons.
 Research interest in user involvement has predominantly focused on issues of
practice and technique; which may reflect the importance researchers have placed
on the value of this type of knowledge. The field is notable for its problematic
terminology; making definition and classification difficult. Role, hierarchy and
ideology are also important themes of the research literature. However, current
conceptualizations of user involvement tend to underplay the significance of
contextual factors in influencing whether user involvement does or does not take
place.
Knowledge about user involvement in health research has been influenced by

established notions of what constitutes research, encouraging particular forms of
service user/researcher relationships
 The meaning of user involvement in health research is constructed by a wide

range of social and political events and established disciplines such as:
Governance - law/policy making and implementation, Economics -
commissioning, consumerism, Research - science, user-controlled research,
quality assessment, Health - medicine/healthcare practice, service development.
Ideas about user involvement can be supported by, or support, particular
conceptual understandings from any of these areas.
 Concept themes (different interpretations of a concept) of knowledge, needs,
rights, responsibility and representation inform thinking about what user
involvement means. They also constrain meaning because culturally dominant
understandings of concepts (such as evidence, democracy, individual rights)
purvey particular notions of what is valid user involvement (proven, equal,
participatory).
 Layers of knowledge about user involvement in health research have built-up over
time as research interests have developed. Current statements about user
involvement in health research indicate that the field will move towards creating
66
evidence of impact and establishing reporting measures – encouraging particular

forms of practice.
 Issues about representation in user involvement are complex and require further
exploration. They include issues about self-selection decisions, professionalisation
of service users who become involved, mechanisms for showing what is
conceivable but not representable, and the issue of non-presentation (situations
where service users chose to develop their own view of research).
 Established notions of evidence mean that carer-user activity, consumer-
organisation uses of knowledge, and the role of knowledge-advocacy is not fully
understood in this context.
Tensions about professional power over user involvement in health research can
not be escaped but they can be better understood
 Three main conceptual tensions have emerged. Firstly the view that user
involvement in research must be supported by policy makers, research
commissioners and the research community, but at the same time it should not be
‘top-down' or controlled by professionals. Second that there should be more
transparency in research, particularly around processes of decision making, but at
the same time there are uncertainties about what the underlying intentions and
interests are. Third that service users should have ‘equal' say, but at the same time
professional ‘know-how' about research systems means that service users can
never gain an equal footing.
 To understand tensions surrounding service user/researcher relationships (and
non-relationships) it is useful to move from a linear view of control towards a
more encompassing understanding of how multiple tensions arise and interrelate,
and how they are experienced. Concepts of control in service user/researcher
relationships have generally been limited to an ‘agency' model, that is who has
access to means and resources and the nature of the prevailing standing
conditions. However, user involvement in health research involves the interplay of
less recognised more socially embedded forms of power. At the level of social
integration, user involvement in health research can be seen to be a consequence
67
of dispositional power which concerns rules of meaning and membership. The

researcher role has traditionally been viewed as ‘generating knowledge', but user
involvement in health research brings into question which people are able to align
themselves with this subject position.
 Any attempt to measure the impact of user involvement in health research faces
the problem of understanding intent. Any purpose, process or outcome is
constructed by a multitude of conscious and unconscious decisions, made by a
multitude of actors, both within and outside of user/researcher relationships.
The evidence base for user involvement in health research could be strengthened
by exploring reasons for resistance, spaces for manoeuvre including experiences of
power, judgement making and thinking styles
 An evidence base for user involvement could be founded on different

perspectives, purposes and priorities. The important thing is to take these issues
into consideration rather than to only seek evidence of effectiveness.
Understanding the impact of user involvement is important for understanding what
can be achieved. Outcome issues are complex because user involvement can be
both beneficial and a drawback for individual people, research processes and
outcomes, and at a wider social level.
 The growth of user involvement in policy and practice means that data are
available for research on this topic. However, like any field of research there are
practical, conceptual and ethical limitations that need to be considered.
Examining reasons for resistance, in terms of professionals, systemic and
paradigmic resistance, offer key starting points.
 Key issues for improving the accessibility of the debates are - using a range of
data collection methods allows for different degrees of discussion and
deliberation; and keeping simple research questions in mind and approaching
these in different ways helps to engage participants.
68
 Researching user involvement in health research requires power in the form of

research skills, knowledge of semantics and concepts, the ability to interpret and
reflect, and access to resources and support networks.
9.3 Wider implications of the study
Research policy and commissioning
1. Commitment that encourages innovation

User involvement in health research can be perceived as a policy mechanism, as
ideology, as a part of research practice, a research method, a matter of skill or
technique, as a deliberative process, as research resources, degrees of control over
research agendas or projects, as a way of becoming empowered or involved in society.
The diversity of meaning can not easily be translated into policies for best practice or
requirements for user involvement in research. The implications for research policy are
that user involvement in health research should be thought of as being developed
partially through policy initiative and through the initiative of service users and
researchers. Research commissioners should support and reinforce this message.
2. Researcher incentives pre-design stage

Differences in participant's views about user involvement in research and variance in
awareness of these differences indicate a level of thought processes that could be made
more explicit. Ultimately decisions about whether user involvement occurs in particular
research studies tend to be within the domain of professional researchers. Whilst it is by
virtue of subjective knowledges and judgments that this happens it would be overly
simplistic to reduce the situation to this. Also at work here is the influence of research
commissioning which encourages researchers to show some commitment to involving
service users in order to attain funding. These processes are politically and socially
connected and hence they are not wholly attributable to the reasons that individual
researchers and individual service users have for interacting with each other. If there is
to be greater researcher commitment to user involvement the incentives should be
emphasized and strengthened throughout research systems.
69
3. Service user incentives – specific groups

Who is not involved in research emerges as an important question. Participants in this
study who were researchers with clinical backgrounds generally only talked about
involving service users who are patients or those with recent experience of treatment or
care. Involving service users who are not currently receiving care was seen as a huge
challenge because the benefits for those being involved are much harder to show. If
research engages only with patients and fails to involve those that find accessing or
using health services difficult the positive potential of research could be directed
elsewhere. A better understanding of the incentives and benefits for different types of
people becoming involved in research would be beneficial for developing new
partnerships. One strategy that could be put into action by research support
organisations and networks working with research commissioners and review bodies, is
to develop accessible information to explain why it is important to involve particular
groups of service users in research and to identify what the benefits and drawbacks
might be. This requires a greater engagement of issues for different types of service
user groups, particularly Black and ethnic minority groups, women and children, and
carers.
4. The right to decline to participate

There is also an international perspective to the implications that can be drawn from this
study. Although user involvement is a stronger feature of UK research policy in
comparison with Australia, researchers working with patients receiving near end of life
care had developed highly flexible approaches to developing good working
relationships with participants in research. In this context many of the barriers to
involving service users were because of the broader challenges facing health research,
including: gaining funding, time and skills to be able to undertake research, overcoming
perceptions that research is unnecessary or harmful; negotiating research governance
procedures; and difficulties developing partnerships with other research disciplines or
health service providers. Yet researchers who had been able to overcome these
challenges said that involving service users had improved the quality of the research in
terms of the questions that were being asked and the depth of understanding that was
gained. They also reported that service users wanted to be at least made aware of the
70
possibilities of participating in research. Policymakers and commissioners should be

aware that service users value the right to decline to participate.
Future research
1. Looking beyond research relationships - to the conditions of possibility

As I will go on to argue in the summary conclusions of this thesis, the study of service
user/researcher relationships should not be limited to a question of control over research
studies or agendas. It requires understanding the practical standpoints and judgments
individuals face in relation to such relationships. Consideration should also be given to
those people and practices which may not be considered part of such relationships but
nevertheless can exert considerable influence over them. This study has shown that
international perspectives can help to highlight the relative significance of influencing
factors such as research policy, resourcing and research assessment criteria.
2. Decisions about knowledge construction – what is it possible to know about and

through user involvement?
Until now this field of research has predominantly focused on questions of definition
and classification. There is a need to study user involvement as a question of
epistemology, looking at it as some sort of decision making of and about knowledge
construction. We also need to look at it as a question of ontology, asking what is it
possible to know about and through user involvement in health research. By exploring
both types of questions it may be possible to draw together a more encompassing
understanding about the ideals and realities of user involvement in health research. I
will suggest one way these issues could be approached in the next section (Section 9.4).
3. Unpacking control issues

Current concerns within the research community about identifying the evidence of
impact of user involvement in health research reinforce the view that the contributions
service users make have a direct causal relationship with research outcomes. This view
is problematic because user involvement in health research involves power relationships
where individuals (including researchers and users) can exert force, control resources
71
and use persuasion. The notion of control should be expanded and built upon to
acknowledge that research, and user involvement in research, is not simply controlled
by an ordered and decisive will of politicians, researchers, service users or any other
group of people. I have argued strongly that resistance, uncertainty and subjective
experiences of power are important areas for future research.
Investigators of health research
1. Awareness of power in the process of research

For those who aspire to build knowledge of user involvement in health research there
are implications for how they choose to conduct themselves. Investigators should be
aware that their influence in the research is more than the questions they are asking or
how they ask them. Their repertoire as investigators involves both presence and
positionality. Reflectivity is useful for examining the instrumentality of subjectivity
(how a person makes use of their self in the research). At the same time researching user
involvement in health research requires power in the form of research skills, knowledge
of semantics and concepts; the ability to interpret and reflect; as well as access to such
resources and support networks. Investigators must be prepared to accept that their
subjective views will change through researching user involvement – potentially
including how they see themselves.
2. Harnessing the explanatory potential of experience

Researchers or service users actively engaged in user involvement may find that their
own experiences provide them with new understandings and lessons that could be of
benefit to others. However, like any field of research there are practical, conceptual and
ethical issues and tensions. Processes of ethical review, payment and research
governance are geared towards involving service users as subjects in research rather
than as active participants in knowledge development. Individuals (including service
users and professional researchers) may experience user involvement as a sense of
‘Ability to', ‘Potential to', or a ‘Sense of being'. Sharing these experiences is important
for understanding what user involvement in health research is and what it does. The
model presented in the next section (Figure 36) may help in these areas.
72
9.4 A model for future research
Insights from this study, combined with the philosophical perspectives the study draws
upon help to provide a platform for engaging with the ‘practical standpoints and choices
social agents face' (Gewirtz and Cribb 2006 p.247) in relation to user involvement in
health research.
The model presented here (Figure 36) combines the approach to knowledge
development that has informed this study with insights from the previous chapter about
orientation of intent. The model illustrates that knowledge of user involvement does not
simply exist in research practice it is subjectively interpreted through the intentions and
understandings of individuals. It corresponds with the view that we are knowledgeable
about our society and capable of acting within it (Giddens 1979), including negotiating
complex social forces of biography, history, locality and broader social divisions
(Williams and Popay 2001). Displaying the relationship between types of framing
knowledges and personal, social and relational orientations helps to account for some of
the multitude of understandings that exist about user involvement in health research. It
corresponds with the idea that decisions cannot ever be value free or independent of
wider social processes (Jones 2001a). The figure provides a starting point for exploring
the types of knowledges and values that may be utilized by a particular individual in
relation to a particular view or understanding about user involvement in health research.
The use of the model could be illustrated by placing any issue at the centre and
considering the questions that surround it, such as decisions about roles, responsibilities,
representation, payments and so on within research studies. The example I have chosen
to illustrate the model is the issue of commitment to user involvement, and in particular
the questions that might face a member of a research commissioning group. My choice
of example aims to award greater attention to decisions that are made before and
beyond service user/researcher relationships. The issue examined here is: Do we fund
research about user involvement in health research? The commissioner's personal sense
of self tells them whether they feel they have the necessary status, credibility, views and
values to be able to make such a decision – conceptualized here as ability to, potential to
and
73
sense of being. The choices are informed by existing knowledge: which makes available
particular definitions, conceptualizations and ideologies (identified in the analysis of the
research literature in chapter 3). The choices are influenced by how the person prefers to
interpret and reflect on current understandings (including knowledge and concept
themes etc.) of user involvement in health research. It is further complicated by the
tensions between personal, relational and social orientation of the person's intentions.
The model can not encompass the full range of information that a person might draw
upon but it does highlight that how user involvement in health research is thought of is
not a straightforward procedure. The model surfaces some of the factors and
judgements that a person might encounter in relation to user involvement in health
research. It does not encompass issues to do with judgements that are made between
social agents such as the influence of particular mechanisms or approaches to
deliberation. Nor does it address issues about processes of delegation. However, the
model does draw attention to personal, relational and socially orientated dimensions of
judgements, and therefore could stimulate thinking about types of judgements where
deliberation may or may not occur. I will examine one such judgement.
The model can be used to illustrate that professional researcher's decisions about
whether to involve service users in a particular research study involve subjective
interpretations of socially available discourses (discursive knowledge) about the
purpose, process and outcomes of user involvement in health research, and within the
context of existing discourses about the purpose, process and outcomes of health
research. To the individual person a judgement about user involvement can be
experienced subjectively as a sense of ability to, potential to and sense of being (self
knowledge). Other factors are also influencing the judgement, for example what is in
the best interests of an individual person involved in research (the personal perspective
of a researcher or service user) alongside what is in the interest of social groups
(decisions made at the group/systems level). Interpretive and reflective knowledges
contextualize the way a judgement is made and understood, all of which can be subject
to knowledges about how things can or may change over time. Drawing these
perspectives together is useful for examining the dilemmas of professional ethics which
74
until now have largely been developed in the context of patient-doctor decision making
(Scambler and Britten 2001; Wirtz et al. 2005; Wirtz et al. 2006; Malterud 2002).
When related to the three value positions of research, identified as rights-based, duty-
based and goal-based by Foster (2001), the model I have presented adds depth and
connects these positions with other types of influencing factors. It seems unlikely that
individual people will always tend to consider service users as active decision makers
who are able to make their own choices about participation and their own assessment of
risks, or that they will always consider duty of care to participants in the research
process to override any duty to extend knowledge and consider the research process as
therapeutic to the participant, or that they always will try to produce the maximum
benefit in terms of the greatest applicability to the greatest number. The model
developed here indicates that such perspectives relate to individual types of judgements
as well as the individual types of values that individuals hold.
75
Figure 36: Framing knowledges
INTERPRETIVE
How are information/perspectives being
interpreted? What are the limitations?
What other types of interpretation could
be made?
RELATIONAL
SOCIAL
What should we do?
What should society do? How
How will the outcomes
affect us?
society?
What is best for us in this
What is best for society in
situation?
this situation?
SELF*
What is my?
‘Ability to'
‘Potential to'
‘Sense of being'
REFLECTIVE**
DISCURSIVE***
What personal, interpersonal and
What are the dominant types of
contextual factors are in
information being used?
operation? How are they
What other types of
influencing what is said and done,
information/perspectives
or not said and done?
might exist and be useful?
PERSONAL
What should I do? How
me?
What is best for me in
this situation?
TEMPORAL
How might information, ideas
and circumstances change
over time?
Notes:
* ‘Ability to' could include: access to resources, ability to achieve goals, make decisions, express
views, deliberate, and adapt to change. ‘Potential to' could include: take up/resistance of roles;
loyalty to ideas or preferred ways of working; potential to gain status, expertise or credibility;
identify and organise interests. ‘Sense of being' could include: valued as a partner rather than
controlled, enabled rather than constrained, empowered rather than exploited, consenting not
coerced, conscious that power operates in different ways (see figure 29, section 6.6).
** Points for reflection could include: political and social influences, theoretical and epistemological
positions, interpretive repertoire, presence and position (see figure 18, section 4.4).
*** Discursive information could include prominent concept themes (see figure 26, section 5.5).
76
9.5 Summary conclusions
If, as research policy and research commissioners emphasise, service users are to
become more actively involved in health research three key conclusions can be drawn
from this study.
First, there is relatively little research specifically about user involvement in health
research. Whilst this reconfirms the findings of several previous studies, the analysis
presented here suggests some reasons why this may be the case. A deficit of research
evidence is a problem because requirements for involvement raise questions about the
rationale and impact of user involvement. Although there is significant call to show
evidence of the impact user involvement can have in research it is important that the
research community does not lose sight of the need to direct research attention to
scoping the size and nature of issues, problems and activities, finding effectiveness
solutions, and establishing wants/acceptability/experiences in relation to user
involvement. Enquiries should not solely be driven by a perceived need to provide
evidence for or against user involvement. There is also a need for research that confirms
alternative ideas about user involvement, describes what is known, and constructs new
meanings.
If we only look at service user involvement in terms of effectiveness, or approach it as a

question of an effective intervention, it is incredibly difficult to isolate it and to attribute
any outcomes to it. I have been quite critical of what could be evaluated and I suggest
that researcher's own views on the topic and service user's views on involvement could
be perhaps evaluated to grasp some of the learning from the process. Such an approach
can be very helpful for developing principles for practice but it is intrinsically very
personal and a very subjective experience that people talk about, which makes it
difficult to establish generic criteria for evaluating effectiveness on this basis.
I do think we need to develop knowledge on user involvement but we can not say
whether it is a good or a bad thing. We need to explore what is good about it and what's
bad about it in different contexts. It can not possibly lead to wholly positive or negative
77
outcomes or experiences. We need to be more critical than that and really look at
different research contexts and different types of people collaborating in different
research contexts as well. Certainly in relation to my own work I have come to look at
user involvement as being about understanding relationships in social contexts, rather
than thinking of user involvement as putting people into research situations. For me it is
about how professionals and members of the public can interact with each other in
useful ways. Perhaps the key to evaluating it is to recognise that user involvement is
both socially constructed but it is also subjectively experienced. If we think in those
terms, that user involvement is a social process that's linked to professional practice, but
that it is also interpreted subjectively, perhaps we can develop better understandings
about what works for whom and why. It is not possible to separate the two and that's
probably why evaluations of effectiveness fall short of accounting for what service
users and researchers experience when they work together.
Although it may be feasible to evaluate the impact of user involvement in some areas –
such as identifying topics to be researched, prioritising topics to be researched,
disseminating research, the impact on members of the research team and the impact on
members of service users involved in the research – it is questionable as to why we
would want to do that. In some contexts it is more tangible to see why it might be useful
but different people have different views about why we should show evidence of
impact, and certainly having evidence can provide lobbying power for bringing about
change. For me, personal learning and subjective experiences need to be the areas
where we focus more attention because that is where practice can be developed and
informed by what people are experiencing and learning. To some extent it is a
challenging area for research because it can be hard to apply theory, to test empirically,
to report on and to get published in academic journals. But that is where the real impact
is – what has happened to people and how people have changed because of user
involvement. These benefits could also be gained in research about public involvement
in service development as well as public involvement in research, in terms of honing the
skills of professionals, and trying to draw links between learning and experience might
actually be fruitful.
78
Research commissioners are more likely to be interested in funding research that

identifies effectiveness outcomes, particularly if they require and fund user
involvement, but that does need to go hand in hand with examining the process. What I
would like to see is researchers reporting more on some of the possible outcomes so
that we start to collect those data. Of course we need to be wary that things will change
over time and not get too stuck in developing protocols for reporting. Different
researchers will prioritise different things and research interests will move off in
different directions. Personally, I would, I think be more interested in researching the
social- subjective issues but that's a personal preference. I would be less inclined to be
trying to show evidence of impact simply because I do not think that we can construct
that image without investing energy in challenging notions of evidence. I think it is
more important to develop practice and to develop good methods and techniques before
we start to try to convince other people that it's great and it works.
It is always going to be difficult to attribute any outcome to any particular person or

individual or even a particular study itself where deliberative processes are involved.
There are well rehearsed arguments in the literature on team working to confirm that
view. Those kind of attribution questions have parallels with user involvement because
it fundamentally it involves teams and where you have different groups of people
coming together the difficulty is capturing what is happening in the process (or not
happening) and relating outcomes to any part of that team. It seems to deconstruct and
undermine the intentions of team working or partnership and I think there's a danger of
taking away some of the quality of the process by studying the impact of the outcome in
a reductionist way.
The overall priority should be to generate an evidence base that reflects what is
important, what is useful and what might lead to change; this requires specific thought.
There are certainly lessons that we could draw from research on complex evaluation to
look more at process outcomes and the values that underpin evaluation. User
involvement is not only a political project it is manifest within a historical socio-
political context characterised by concerns about recognition of public interests in
public services, efficiency and responsiveness to users, rationing and priority setting,
79
quality and safety, and pluralism. Arguably an evidence base should be consistent with
efforts to address such concerns. Individuals interested in developing evidence of user
involvement may find figure 30 (section 7.2) to be a useful starting point for
considering the issues.
Second, understandings could be strengthened by greater application and development

of theory in this field. Current conceptualizations of user involvement in research tend
to underplay the significance of external influencing factors. Notions of tokenism and
empowerment are used as blanket terms which could be developed by connecting with
theory literatures. That said tokenism appears to be a concern in places where user
involvement is an ill-fit with existing accountability structures. One such example is
research governance procedures for service users working as co-researchers (especially
financial accountability, occupational health and arrangements for indemnity and
insurance), research ethics issues (especially consent and what information is treated as
data within studies), payments for service users, education and training, and so on.
Tokenism is also a concern in relation to places where user involvement is an ill-fit with
dominant professional cultures, in particular committee/advisory group structures
(especially the isolated service user championing the user view), research
commissioning (especially where service users lack the credentials to attain research
funding), research assessment (especially user-led publications in academic journals).
Tokenism is expressed as occurring in places where user involvement is an ill-fit with
the views of professional researchers (especially views about how knowledge should be
developed and how researchers act out their role).
Although researchers often want to ensure that they devise equitable and fair approaches
to involvement, in the end those values can be undermined because of attempts to be
inclusive or to maintain representation of underrepresented groups. It can be very
difficult for researchers to manage and uphold those different types of values once a
project is underway. It means trying to build in some flexibility into studies and to know
when to move away from theory and to try to understand why it is not working. A key
point is for researchers to be sensitive to such tensions and not try to quash them but to
use them and to examine why they have come about. That has certainly happened to me
80
on several occasions, for example, when I was consenting members of a service user
reference group members were questioning the process, asking – why do we have to do
this, we thought you wanted us to be equal partners? The idea of involving people as
equal partners and the realities of research governance and ethical issues surrounding
user involvement are only beginning to be thought through and articulated. It is those
tensions, about the problems with existing structures that make user involvement too
easy to dismiss as being too challenging. Research and change is needed to remove
these barriers or to find ways to work around them. Knowledge about user involvement
in health research could be strengthened by exploring four areas in particular: reasons
for resistance, experiences of power, judgement making and thinking styles.
Researchers interested in exploring these and other avenues may find figure 29 useful
(Section 6.6).
Third, it is important that developing evidence about user involvement in health

research does not hinder innovation in relationships between service users and
researchers. Caution should be expressed when establishing rationale, methods and
reporting mechanisms because of the risk of additional administrative burden and
closing down opportunities for difference. Innovation in this area is currently being
achieved because of language development, emergent and alternative epistemological
stances and the sharing of subjective experiences. At this developmental stage in the
history of user involvement in health research it is vital that service user/researcher
relationships are given space to grow.
There is also the important possibility that the benefits from user involvement can grow
as particular service user and researcher partnerships, skills and opportunities develop.
In any relationship, a partnership can be strengthened by mutual understanding and
support. Concerns about refreshing relationships must be put against that kind of
development of relationships. I think we need to do more work as a research community
to understand and accept that in some situations we do need to invest in longer-term
nurtured relationships and in other circumstances it is more appropriate to enter into a
different sort of relationship.
81
User involvement must be about adding quality to health research but notions of quality
are themselves a contentious issue. As a researcher you see the quality that is added to
what you are doing when you work with service users. You are also aware that in some
circumstances it would not be ethical to involve service users, not simply because of
confidentiality or consent, but because of the way the research has been set up, by
whom and why it has been commissioned, the time scale and the topic. You are also
aware of the possibility that service users could be exploited. Under these
circumstances it can not purely be an ethical or moral reason that drives us to involve
people who receive services or those who live with particular health conditions.
Improving quality of health research through involvement must be about adding
understanding and bringing different perspectives to research issues. I am not a
clinician by background and neither have I had personal experience of a serious health
condition. For me research is a way to hear the views of clinicians, it is a way to hear
views of service users and to try and understand issues from different perspectives. This
type of opportunity does not arise in every research study but neither should we accept
that professionals can always speak for service users.
What I am concerned about is that there is a real danger in any relationship there can be
a partner that is exploited. It can happen in any real walk of life and user involvement
needs to be thought of in that way. But, neither do I wish to scare people away or to
suggest that exploitation is always perceivable to either party. People are generally too
intimidated by research and researchers anyway. If we continue to see research as being
risky, in a negative way, we risk loosing the positive benefits of it. If we undertake
research in a considered way and if we involve people on their own terms, it is generally
always going to be beneficial. Some of the comments I have heard from service users
about the opportunities involvement has brought for them are very powerful, but the
relationship has to be reciprocal. Everyone (individuals and society) has to gain
something from it. It is getting those circumstances right – that is where research should
be focussed.
82
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124
Appendices
125
Appendices
Appendix 1: Terms and definitions
Service user
‘Service user' is a term that is widely used in United Kingdom (UK) health policy and health
service literature. Health policy document generally use the term to mean anyone that has in the
past, is currently, or may in the future access National Health Services. In some situations the
terms ‘consumer', ‘lay' or ‘patient' are used interchangeably with ‘service user' and the term
may be used to include the users of social care or independent health services.
User involvement
In the research literature the term ‘user involvement' has been used in relation to a wide range
of interactions between service users, health professionals, service managers, researchers and
educators. The term is generally used to describe the active involvement of service users in the
design, undertaking or evaluation of research and related activities. Such activities might
include eliciting and communicating the views and opinions of service users, research involving
user-researchers, co-researchers or peer interviewers in designing research, collecting or
analysing data, involving service users in developing patient focused care or outcomes, the use
of participatory research methods and the involvement of service users in the development and
dissemination of research findings. The terms user- or carer-led and user- or carer-controlled
research are sometimes included under this term but they may also be used to mean research
that is initiated or controlled by carers or users.
Research terms:
Axiology: The study of a person's own values

Ontology: The study of what exists, which entities are real, is there a world independent of the
mind
Epistemology: The study of types of knowledge, what it is, its possibilities and limitations
Method: A system of building knowledge
Methodology: A technique for creating knowledge
Empirical: something that can be experienced, observed or measured
Reflexivity: A technique for understanding axiology
Concept: An idea
Theory: A postulated idea or prediction
126
Appendices
Table 8: Summary of ontology and epistemology
Stance Divisions Ontology Epistemology
Reality exists independently The view of the world that we derive

Naive realism
of human from our senses is,
"direct realism" or constructions generally, to be taken at face value
Realism "common sense Reality is how it appears to Reality can be known directly and
realism" us correctly
The world is made
It is possible for knowledge to
up of structures
approximate closely to an external
and objects that Scientific realism reality
have cause and
effect relationships
with one another
Independent reality consists Anything that exists can be detected
Materialism only of matter through the senses
There is a true reality Causes and regularities can be known

Positivism Logical positivism – only that which
can be measured is worth researching
Subjective or Bayesian probability –

the mathematical theory of
probability is applicable to the
degree to which a person believes a
proposition
Transcendental There is a mind- Acquiring knowledge is a human
realism independent world activity which is culturally
(Miles and (ontological realism) determined (epistemological
Huberman) relativism)
Reality exists on different Our view of reality is filtered by our
levels (real, actual, experiences of the world
Critical realism empirical) Reality is mediated by our
perceptions and beliefs - information
is not value free
There is no direct access Constructions can provide us with
Subtle realism to reality. People's views, information about the phenomena to
beliefs and behaviour are which they refer
(Hammersley) constructions
Reality is beyond our We can build knowledge between us

awareness because it is but it is constructed from our
Social
filtered by our individual subjective positions (Husserlian
constructivism
understandings of the world phenomenology)
Constructivism
It is impossible to make -
Radical any assumptions or offer
constructivism ay kind of account of
reality
Extreme There is no reality Rejection of concepts of truth or
relativism knowledge
Idealism Subjective idealism No single shared reality,

(relativism) only a series of alternative
No external reality
constructions and
beyond human
understandings
constructions, what
exists There is a world of
fundamentally is Objective idealism collectively shared
ideas understandings
127
Appendices
Appendix 2: Literature Review
Structured review of the research literature (Chapter 3)
Searches Display
(consumer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp.
[mp=ti, ab, hw, sh, tn, ot, dm, mf, nm]
British Nursing Index <1994 to March 2008> (38)
1 11732
British Nursing Index Archive <1985 to 1996> (13)
EMBASE <1980 to 2008 Week 14> (473)
Ovid MEDLINE(R) <1950 to March Week 4 2008> (11208)
(user adj3 (participat* or involve* or empower* or collaborat* or consult*)).mp.
2 895
(client adj3 (participat* or involve* or empower* or collaborat* or consult*)).mp.
3 630
(patient adj3 (participat* or involve* or empower* or collaborat* or consult*)).mp.
4 27832
(public adj3 (participat* or involve* or empower* or collaborat* or consult*)).mp.
5 3423
(carer adj3 (participat* or involve* or empower* or collaborat* or consult*)).mp.
6 144
(lay adj3 (participat* or involve* or empower* or collaborat* or consult*)).mp.
7 269
((involvement or collaboration or participation or partnership) adj2 research).mp.
8 2484
1 or 2 or 3 or 4 or 5 or 6 or 7
British Nursing Index <1994 to March 2008> (620)
9 British Nursing Index Archive <1985 to 1996> (150) 43796
EMBASE <1980 to 2008 Week 14> (10912)
Ovid MEDLINE(R) <1950 to March Week 4 2008> (32114)
10 8 and 9 286
11 remove duplicates from 10 230
Excluded papers (n=15):

• Papers primarily concerning user involvement in research about public services other than
health services, such as housing or crime prevention.
• Papers concerning involvement or decision making about a person's own care.
• Papers primarily concerning competency or willingness to consent to participate in
clinical research trials. (Papers reporting potential participant's views of participation are
included)
• Papers relating to the involvement of clinical professionals in research or the willingness
of clinical professionals to support recruitment to research studies.
• Letters to journal editors or comments on articles.
*Additional included papers (n=43)

• Papers identified by hand searching or through citation in other papers.
Total included: n=170
128
Appendix 2: Literature tables (Chapter 3)
Reference Locality Topic and nature of the study Group(s) Key findings/issues raised
Abelson et al. (2007) Canada Public participation Members of the  A generic public participation method can be implemented in a variety of contexts and with
Examining the role of general public considerable success. Context exerts fostering and inhibiting influences that contribute to more
context in the Quasi-experimental design, to assess the performance and regional (or less) successful implementation.
implementation of a of a generic public participation method implemented health sector  Public participation practitioners are encouraged to pay careful attention to the types of issues
deliberative public in 5 Canadian regionalized health settings between decision-makers and decisions for which they are seeking public input.
participation 2001 and 2004. Participant and decision-maker  Sufficient organisational resources and commitment to the goals of the public participation
experiment: results from perspectives were assessed and, through direct process are also required. Attention to these contextual attributes and their influence on the
a Canadian comparative observation, the roles exerted by contextual variables design and outcomes of public participation processes is as important as choosing the "right"
study. Social Science & over the public involvement processes were public participation mechanism.
Medicine 64 (10) 2115- documented and analysed.
28.
Abma (2005) Patient Netherlan Methods of engaging participants in research about Patients and  A responsive-constructivist approach to evaluation fits with the aims and features of patient
participation in health ds spinal cord injuries clinical participation.
research: research with researchers in  There are unexpected difficulties and potentials in creating social conditions for patient
and for people with the field of participation in health research.
spinal cord injuries. spinal cord
Qualitative Health injuries
Research 15 (10) 1310-
28.
Addington-Hall (2002) UK Methods of engaging palliative care patients and their Palliative care  There are difficulties in defining a 'palliative care patient' and the question of whether there are
Research sensitivities to families patients and specific ethical issues when researching palliative care.
palliative care patients. family members  Methodological issues include; the negotiation of access via health professionals, the choice of
European Journal of appropriate data collection methods and tools, the consequences of high attrition rates and the
Cancer Care 11 (3) 220- use of retrospective surveys of bereaved relatives.
4.  Key areas for research are; patients' and families' experiences of research participation, the
impact of being approached on those who decline, how the characteristics of those who
participate differ from those who do not and the likely impact of this on findings. Research is
also needed into patient and family motivations for participation, and whether and how these
change as the disease progresses. To ensure that the ‘voices' of palliative care patients and their
families are heard by both service providers and policy-makers.
Alvarez et al. (2006) USA Recruiting minority ethnic populations African  Establishing relationships with organisations that serve ethnic minority communities can
Increasing minority American and facilitate recruitment. To create a successful recruitment process, a strategic plan of action is
research participation Hispanic necessary prior to implementing community outreach efforts.
through community women who are  The article presents a recruitment process model that can facilitate recruitment and help to
organisation outreach. HIV+ and organise, document, and evaluate community out-reach strategies.
Western Journal of recovering from
Nursing Research 28 (5) substance abuse
541-60; discussion 561- disorder
3.
129
American Academy of USA Recommendations for minimizing harm in the case of Relates to the  Conventional risk-benefits assessments frequently fail to recognize harms that can occur in
Pediatrics Committee on ethical issues associated with community-based involvement of socially identifiable populations as a result of research participation.
Native American Child, research, with particular reference to children and children and  Community involvement in the research process can minimize harm.
H. (2004) Ethical young people young people in
considerations in research
research with socially
identifiable populations.
Pediatrics 113 (1 Pt 1)
148-51.
Ammerman et al. (2003) USA Expectations and satisfaction of community-based Pastors and lay  Research expectations included honest and frequent communication, sensitivity to the church
Research expectations participatory research leaders (n=78) environment, interaction as partners, and results provided to the churches. Satisfaction with the
among African research partnership was high, but so was concern about the need for all research teams to
American church Telephone and self-administered print surveys were establish trust with church partners.
leaders in the PRAISE! administered to all participants. In-depth interviews  Pastors and lay leaders have high expectations regarding university obligations in research
project: a randomized were conducted with 4 pastors after study completion. partnerships. An intervention study based on CBPR methods was able to meet most of these
trial guided by expectations.
community-based
participatory research.
American Journal of
Public Health 93 (10)
1720-7.
*Arnstein (1969) 'A USA Development and discussion of a model of citizen Relates to  The poor have little control over decisions about their own lives. Different levels of participation
ladder of citizen control. involvement of are appropriate in different circumstances of public decision making.
participation'. Journal of the poor in
the American Institute decision
of Planners, 35 (4) 216- making
224.
Bagley et al. (2007) Is a USA Evaluation of a "wage-payment" model to inducements Children and  Older children, mainly those >9 years of age, showed an appreciation for the role and value of
wage-payment model for children to participate in research adolescents money through (a) an accurate concept of the material value of money in society or (b) asking
for research between the for a realistic amount of money in exchange for their research participation.
participation appropriate Interviews explored hypothetical participation ages of 4 and  Younger children, primarily those <9 years of age, showed an inability to appreciate the role and
for children? Pediatrics decisions for up to 4 research scenarios. To evaluate 16 years who value of money by: (a) asking for excessive monetary amounts that bore no relationship to the
119 (1) 46-51. factors that would influence children and adolescents' had diabetes, sum warranted by participation; (b) having no concept of what that money could buy; (c) not
decision-making for research participation. asthma, comprehending the meaning of a wage as earning a reward for working; or (d) justifying
seizures, or no proposed amounts with reasons unrelated to the time and effort involved.
chronic medical  An age-appropriate token of appreciation as an inducement for research participation is
condition appropriate for the younger child who is <9 years old, because they generally have an inadequate
(n=42) understanding of the value of money and, therefore, the meaning of a wage. A wage-payment
model for compensating older children (>9 years of age) and adolescents for the time and effort
130
of research participation is appropriate because they generally understand the meaning and value
of a wage.
Barratt et al. (2007) Australia Barriers and incentives to engaging users of illicit drugs People injecting  Positive aspects of drug research were its capacity to provide valid information about drug use
Positive and negative in research. illicit drugs (39%), the potential to improve drug-related policies and practices (20%) and benefits to the
aspects of participation recruited from community (14%).
in illicit drug research: Participants were asked to nominate the 'best' and needle and  Negative aspects of drug research included concerns about lack of, or negative impact of
implications for 'worst' things about research. syringe research findings (31%), and personal dislikes about research projects, such as discomfort
recruitment and ethical programs (27%), inconvenience (21%) and risk (9%).
conduct. International
Journal of Drug Policy (n=507)
18 (3) 235-8.
Bates and Harris (2004) USA Recruitment of African Americans biomedical African  African Americans suggested issues other than the negative events of the Tuskegee study
The Tuskegee Study of research. Critical qualitative analysis of focus group Americans and influence the decision to participate in research. African Americans indicated specific reforms
Untreated Syphilis and data. European that would increase participation in research.
public perceptions of Discussions focused on the Tuskegee Study of Americans
biomedical research: a Untreated Syphilis (TSUS) in the Negro Male, a
focus group study. clinical study conducted between 1932 and 1972 in
Journal of the National which 399 (plus 201 control group without syphilis)
Medical Association 96 poor and mostly illiterate African American
(8) 1051-64. sharecroppers were used as subjects to observe the
natural progression of syphilis without medicine. This
study became very notorious because it was conducted
without due care to its subjects, and led to major
changes in how patients are protected in clinical
studies.
*Beresford (2002) User UK Discusses underlying values of different approaches to Not applicable  Different approaches to user involvement can be related to consumerist and democratic models
involvement in health user involvement in policy and practice. of participation in policy and practice.
research and evaluation:
liberation or regulation?
Social Policy & Society
1 (2) 95-105.
*Beresford (2003) User UK Discussion paper which looks at social and political Not applicable  Argues that top-down politically/managerially controlled user involvement had subsumed a
involvement in health movements behind user involvement in research and bottom-up lay ideology of democratic empowerment.
research: Exploring the identifies challenges of managerial and instrumental
challenges. Nursing purposes and liberatory approaches which are based on
Times Research 8 (1) personal and political empowerment.
36-46.
*Beresford (2007) User UK Discusses user involvement in research in relation to Not applicable  User involvement in research offers a potential approach to health inequalities research. There is
involvement, research overcoming health inequalities. (relates to a danger of recreating structural inequalities in health if seldom heard groups are not involved in
131
and health inequalities: groups research.
developing new suffering health
directions, Health and inequalities)
Social Care in the
Community, 15 (4) 306-
312.
*Beresford and Croft UK Discusses political moves towards participation across Not applicable  Democratic principles of participation may not always support inclusion.
(1996) The Politics of public services.
Participation, in D.
Taylor (ed) Critical
Social Policy: a reader.
London: Sage.
Beresford (2005) UK Discussion paper of positivist assumptions about the Not applicable  The proposal discusses ways in which such (objective and subjective) distance may be reduced,
Developing the priority of values of 'distance', 'neutrality' and (Although to improve the quality of research, to enable more equal involvement of service users and their
theoretical basis for 'objectivity' (which it argues discriminate against paper relates to direct experience and to make it possible for non-service user researchers to work alongside
service user/survivor-led service users and their experiential knowledge). The mental health service users on more equal terms.
research and equal paper explores instead the idea that 'the shorter the service
involvement in research. distance between direct experience and its users/survivors)
Epidemiologia e interpretation, then the less likely resulting knowledge
Psichiatria Sociale 14 is to be inaccurate, unreliable and distorted.
(1) 4-9.
Beresford (2007) User UK Discussion paper of the role that user involvement Not applicable  Particular attention should be paid to the issue of enabling the diverse involvement of service
involvement, research research may play in health inequalities research. The (Although the users in order not to reinforce existing exclusions and barriers in research, policy and
and health inequalities: paper examines the pressures for and against such user paper relates to practice.
developing new involvement research, its different expressions and diversity of
directions. Health & ideological relations, and what particular contribution it service users)
Social Care in the may have to offer in researching health inequalities.
Community 15 (4) 306-
12.
Boote et al. (2006) UK Delphi study carried out to reach consensus on Consumers,  Consensus was reached on eight clear and valid principles of successful consumer involvement
Principles and indicators principles and indicators of successful consumer researchers and in NHS research, with each principle having at least one clear and valid indicator.
of successful consumer involvement in NHS research. consumer-  Subgroup analysis revealed few significant differences in how consumers, researchers and
involvement in NHS researchers consumer-researchers rated the principles and indicators.
research: results of a  Further research is needed to assess: (1) the usefulness of the principles and indicators for
Delphi study and differing models of consumer involvement, health research methodologies, and subject areas
subgroup analysis. within health research; and (2) the impact of 'successful' consumer involvement on health
Health Policy 75 (3) research processes and outcomes.
280-97.
132
Boote et al. (2002) UK Critical review of the state of our knowledge on Not applicable  The paper discusses definitions of 'the consumer'; considers why consumer involvement is
Consumer involvement consumer involvement in health research. believed to be important to health research; traces the development of the policy; analyses the
in health research: a epistemological and methodological implications of the policy; discusses the various levels of
review and research The authors map out a research agenda with the aim of consumer involvement in research; and outlines the objections to the policy that have been put
agenda. Health Policy stimulating systematic, empirical inquiry into consumer forward by clinicians and researchers.
61 (2) 213-36. involvement in health research.  Four questions were identified during the review as being in need of theoretical and empirical
attention: (1) how can consumer involvement in health research be further conceptualised? (2)
how and why does consumer involvement influence health research? (3) how can the influence
of consumers in health research be measured and evaluated? and (4) what factors are associated
with 'successful' consumer involvement in health research?
Bradburn and Maher UK User and carer participation in research in palliative Patients  Patients thought that the focus group priorities were important and scored research into
(2005) User and carer care. Describes the questionnaire component of a two- receiving emergency care, pain control and helping doctors to understand what patients were saying as
participation in research stage study to examine the research priorities of palliative care most important. Differences in priority were associated with gender, age and in-patient versus
in palliative care. palliative care patients. In the first stage focus groups day therapy patients.
Palliative Medicine 19 were conducted to determine a list of priorities for
(2) 91-2. future research: a questionnaire created from these
themes was then used in five hospices across East
Anglia.
Buchwald et al. (2006) USA Factors that influence participation in health research 319 patients and  Close attention to study type, institutional sponsorship, community involvement, potential risks
Attitudes of urban among American Indians and Alaska Natives. 101 staff from and benefits, and topic are essential to conceptualizing, designing, and implementing successful
American Indians and an urban health research with American Indian and Alaska Native populations.
Alaska Natives Vignettes that described 3 types of research studies (a American
regarding participation behavioural intervention trial, a genetic association Indian
in research. Journal of study, and a pharmacotherapy trial) were used to community
General Internal survey patients and staff within a health care facility to
Medicine 21 (6) 648-51. ascertain how study design, institutional sponsorship,
community involvement, human subjects' issues, and
subject matter influence participation.
Buckeridge et al. (2002) Canada Collaborative community/university research project to Community/  A community health information system was developed collaboratively. Problems fell into four
Making health data improve access to community health information, and university main areas: maintaining user involvement in system development, understanding and integrating
maps: a case study of a to enhance knowledge of the development of partnership data, bringing disparate data sources together, and making use of assembled data.
community/ university community health information resources and  Major themes emerging from the community/university collaborative research process included
research collaboration. community/university collaboration. Collaborative separate community and university cultures, time as an important issue for all involved, and the
Social Science & process assessment entailed analysis of archival impact of uncertainty and ambiguity on the collaborative process.
Medicine 55 (7) 1189- material, interviews with investigators and participant
206. observation.
*Cahill (1996) Patient UK Concept analysis of patient participation in the context Relates to  Develops a model of hierarchical relationship between concepts of involvement, participation
133
participation: a concept of nursing practice. nursing care and partnership in nursing care.
analysis. Journal of
Advanced Nursing,
24:561-571.
Campbell et al. (2007) USA Pilot study to explore the feasibility and efficacy of African  Partners who underwent CST reported less caregiver strain, depression, and fatigue, and more
Facilitating research coping skills training, an intervention developed to American men vigor, with moderate effect sizes observed that approached conventional levels of statistical
participation and enhance coping with treatment side effects in a sample with prostate significance.
improving quality of of African American prostate cancer survivors and their cancer and their  These preliminary findings suggest that telephone-based CST is a feasible approach that can
life for African intimate partners. The intervention was delivered in a partners (40 successfully enhance coping in African American prostate cancer survivors and their intimate
American prostate telephone-based format designed to facilitate research couples) partners, therefore supporting research participation.
cancer survivors and participation. A total of 40 couples were randomized to
their intimate partners. either 6 sessions of CST or usual care. Survivors
A pilot study of completed measures of disease-specific quality of life
telephone- based (QOL) related to urinary, sexual, bowel, and hormonal
coping skills training. symptom domains, as well as measures of global QOL
Cancer 109 (2 (i.e., physical functioning and mental health). Partners
Suppl) 414-24. completed measures of caregiver strain, mood, and
vigour. Analysis of data from 30 couples (12 couples in
CST, 18 couples in usual care) indicated that CST
produced moderate to large treatment effects for QOL
related to bowel, urinary, sexual, and hormonal
symptoms.
Contant et al. (2006) USA Feasibility study to determine how to consult the County  All methods proved feasible, but telephone surveys were most efficient and guaranteed the
Community consultation community in emergency research and what to do with residents desired demography. Even for a very low-risk study, only 79.75% of respondents would be
in emergency research. the findings. In connection with an ongoing study of l- (n=456) willing to participate. The rate of approval for the major features was lower, with only 67.78%
Critical Care Medicine arginine for brain injury at a public hospital's trauma Patients and approving of the risk/benefit ratio, 53.7% approving of randomization, 57.66% approving of the
34 (8) 2049-52. centre, consultations with three sets of community individuals in consent waiver, and 44.45% approving of the location. The most significant factors affecting the
representatives using different methods. In each case, the waiting area rate of approval were the method of consultation and the framing of items (both p < .001), age,
the same instrument was used to ascertain their (n=566) ethnicity, and previous research participation (all p < .01).
attitudes toward the study in general and toward its Public meetings  Community consultation is feasible, but its results depend heavily on method of consultation,
major features (randomization, waiver of consent, (114 framing of questions, and choice of community. It may well demonstrate unexpectedly
location, risks/benefits). To control for framing effects, participants) substantial opposition. There needs to be a better definition of the process and a better
items were randomly presented in a positive or negative understanding of how to respond to its results.
fashion.
Corbie-Smith et al. USA Community members' perceptions of trust, benefit, Members of  A randomized clinical trial designed with a CBPR approach was associated with high levels of
(2003) Trust, benefit, satisfaction, and burden associated with participation in African trust and a perceived benefit of satisfaction with the research process.
satisfaction, and burden: research. American
a randomized controlled churches
trial to reduce cancer A randomized controlled trial tested a cancer
134
risk through African- prevention intervention (Increase Smart Eating) in
American churches. members of African-American churches. Data were
Journal of General collected at baseline and 1-year follow-up.
Internal Medicine 18 (7)
531-41.
*Cox (2000) Enhancing UK Using a qualitative approach, patients with advanced Adult patients  Trial participation is a dynamic process, that has a different meaning and impact according to the
cancer clinical trial cancer were interviewed to examine their perceptions undergoing stage of trial involvement the patient is experiencing. The findings identify how patients
management: of participating in early phase anti-cancer drug trials. cancer perceived the offer of the trial, dealt with the trial treatment, and came to terms with trial
recommendations from Patients' views and experiences were explored, treatment and conclusion.
a qualitative study of primarily through the use of in-depth interviews, with participating in  The recommendations put forward in this paper focus on acknowledging the contribution trial
trial participants' additional information accessed through two widely- clinical trials participants make to cancer research, enhancing the process of preparing patients for trial
experiences. Psycho- used quality of life questionnaires, at the beginning of, (n=55) participation, recognizing the need for continuing care, the incorporation of patients and
Oncology 9(4): 314-22. during and after trial participation. potential patients' views into the clinical trials system, and educating the public about clinical
trials.
Crighton et al. (2002) USA Qualitative research study of reciprocity (i.e., a mutual Seven patients  Four content themes emerged in the analysis: Willingness to Help, Reassurance That the Deficits
Reciprocity for patients exchange of benefit) in study participation in head and with head and Patients Experience Are Common, Participation Provides Social Contact, and Confirmation of
with head and neck neck surgery clinic in an urban tertiary hospital. neck cancer Clinically Significant Findings. A process theme, Unveiling the Experience, integrated the
cancer participating in recruited to content themes in relation to participation itself.
an instrument Thematic analysis of field notes on study participation participate in an  A notion of reciprocity in research participation is apparent. The role of the study nurse is an
development project. from a parent psychometric study. instrument important element in the process of reciprocity.
Oncology Nursing development
Forum Online 29 (10) project.
E127-31.
Daugherty et al. (1998) USA Feasibility study of advanced cancer patients in phase I Advanced  Twenty-nine patient-subjects participated in the phase I trial, with 24 who agreed to and
Study of cohort-specific trials to be directly involved in decisions of dose cancer patients completed the survey interviews. Seventy-six percent of patient-subjects opted to choose their
consent and patient escalation. in Hematology/ dose of the agents under study, and 28% chose the highest available doses.
control in phase I cancer Oncology  More than half of the patient-subjects (56%) felt some degree of comfort in being asked to
trials. Journal of Clinical Three-step informed consent process that used cohort- Clinics choose their dose of chemotherapy, with 53% stating that being asked to choose their dose made
Oncology 16 (7) 2305- specific consent and allowed them the option to choose them feel in control, fully informed, or content.
12. their own doses of the chemotherapeutic agents under  The trial design may reduce the magnitude of many of the commonly recognized ethical
study. Dose escalation occurred when a patient-subject dilemmas associated with this form of clinical research, which include difficulties with
chose a higher untested dose after they received information provision and the understanding of possible risks and benefits of phase I trial
information on all previously assessable patient- participation, through direct subject involvement in research decision making by otherwise
subjects. In addition to the phase I trial itself, a survey potentially vulnerable cancer patients.
that consisted of structured interviews, which sought to
evaluate patients' experiences with the interactive
subject-choice phase I trial design and consent process,
was conducted with participating subjects.
*Dixon (1999) A UK Reviews research on consumer involvement in research Relates to  Identifies alternative rationale and outcomes for involving consumers in research.
135
Database Report on research on  Suggests consumers can make a range of contributions to the process of research.
Consumer Involvement consumer
in Research. University involvement
of York: Centre of
Health Economics.
Dixon-Woods et al. UK Literature review of issues of conducting research in Relates to  Children with cancer and their families may participate in a wide variety of studies in different
(2006) Researching the area of chronic childhood illness, using the example involving research traditions, including social science studies, epidemiological, biological and genetic
chronic childhood of childhood cancer. children with research, and clinical trials. Different concerns about research participation have been raised in
illness: the example of chronic illness these different contexts.
childhood cancer. in research  Sociological debate has tended to characterize exclusion from research as a manifestation of
Chronic Illness 2 (3) assumptions of poor competence on the part of children, and to see inclusion in research as a
165-77. means of restoring proper balance in power relations and giving children a voice. The ethical
imperative within clinical research, on the other hand, has been in favour of protection of
individuals from risk or direct harm.
 Lack of consensus on issues such as the status of children's consent for research participation
persists, in part because debates have taken place within rather than across disciplinary
boundaries, and in part because of a tendency to debate issues as ethical principles in an
empirical vacuum. The lack of research on the experiences and views of those asked to take part
in childhood cancer research is striking.
*Donovan et al. (2002). UK A study of patients with cancer who have experience of Patients with  Participant experiences can be used to inform the design of recruitment procedures and to
Capturing users' participating in clinical trials. cancer improve the experience of participation.
experiences of participating in
participating in cancer clinical trials
trials. European Journal
of Cancer Care 11(3):
210-4.
Dyregrov et al. (2000) UK Interview study of how refugees felt about participation Bosnian refugee  The refugees generally rated participation as positive. A few parents lacked information that
Refugee families' in research about their experiences. families could have enabled them to inform the children better before the interviews.
experience of research (30 family
participation. Journal of members from
Traumatic Stress 13 (3) 9 families
413-26. including 14
children aged 6
to 19)
Eakin and Maclean Canada The paper addresses four issues that pervaded Conference  The emphasis on community participation in research expresses an attempt to make research
(1992) A critical conference deliberations: the relevance of qualitative delegates more relevant and accountable, but it also may inhibit the theoretical grounding of research, and
perspective on research approaches to research, the importance of community create strain between pragmatic and scientific interests.
and knowledge participation in the research process, the need to
development in health broaden the disciplinary base of health promotion, and
136
promotion. Canadian the possibilities for a critical research perspective.
Journal of Public Health
Revue Canadienne de
Sante Publique 83 Suppl
1: S72-6.
El Ansari (2005) South Discussion of 3-year experience of undertaking Not applicable  Five main challenges exist: the value systems of those collaborating in the research; the
Collaborative research Africa collaborative public health research with five (relates to stakeholders' costs and benefits of being involved; issues of empowerment and capacity
partnerships with disadvantaged communities in various provinces of working transfer; the need for multidisciplinary research approaches; and the prerequisite of the clarity
disadvantaged South Africa. research with of relationships and roles between researcher and community.
communities: challenges disadvantaged  Challenges increase exponentially with the inclusion of more research sites, more stakeholders
and potential solutions. communities in or when undertaking cluster research.
Public Health 119 (9) provinces of
758-70. South Africa)
*Elliott et al. (2002) UK Discusses a number of key issues relating to the Parents who use  Identifies the need to provide on-going support for the interviewers, a sense of distance felt by
Harnessing expertise: employment of peer interviewers by reflecting on a illegal drugs the researchers from the raw data they collected, and the difficulties of gaining from the skills
Involving peer project designed to explore the views and experiences and experiences of peer interviewers without exploiting their labour.
interviewers in of parents who use illegal drugs.  The paper also explores the advantages of involving peer interviewers closely in research work
qualitative research with and reflects on the nature and boundaries of expert knowledge that can become evident in such
hard-to-reach collaborations.
populations. Health  The need for a certain amount of flexibility over the roles and domains of control that lay experts
Expectations, 5 (2):172- and researchers traditionally inhabit is suggested.
178
Entwistle et al. (2002) UK This paper draws on contributions to and discussions at Conference  Challenges relate to: the theoretical and conceptual underpinnings of research; participation rates
Researching experiences a MRC HSRC-sponsored workshop 'Researching users' delegates and participant profiles; data collection methods (the retrospective nature of accounts,
of cancer: the experiences of health care: the case of cancer'. The description and measurement, and data collection as intervention); social desirability
importance of paper focuses on the methodological and ethical considerations; relationship considerations; the experiences of contributing to research; and the
methodology. European challenges that currently face researchers who use self- synthesis and presentation of findings.
Journal of Cancer Care report methods to investigate experiences of cancer and
11 (3) 232-7. cancer care.
Evans et al. (2004) USA This study examined adult and group influences on Adults and  Adults provide individual guidance to youth groups and through existing tobacco control
Adult and group youth participation in youth empowerment Statewide adolescent networks affect the social context in which programs are implemented.
influences on Youth Movement Against Tobacco Use programme. participants in  Adult involvement did not have a meaningful direct effect on group factors or collective
participation in youth the Statewide participation. Group factors mediated the relationship between adult involvement and collective
empowerment The authors tested hypotheses about the direct and Youth participation. Further research is needed on how to measure adult involvement and its
programs. Health indirect relationships between adults, groups, and youth Movement relationship to youth participation.
Education & Behavior collective participation. They used data from adults and Against
31 (5) 564-76. youths to develop a measurement model of four higher Tobacco Use
order factors: adult involvement, group structure, group programme
climate, and collective participation. They tested
137
relationships between these factors in a structural
equation model.
*Faulkner (2004) UK Review of training for service users involved in Organisations  Training can be beneficial to participants' personal development and confidence.
Capturing the research providing  Training often led to actual involvement in research.
experiences of those training for  Only a small number of organisations provide open access training on a regular basis.
involved in the TRUE service users
Project: a story of
colliding worlds.
Fielden et al. (2007) Canada Community-academic partnership research. This paper Researchers and  Key considerations of developmental model in the context of an ongoing research partnership
Key considerations for reports on the learning process of academic and community are; the complexity of the research partnership, power and accountability, alignment with health
logic model community members who worked together in members promotion policy, and the iterative nature of program design.
development in research developing a logic model for a research program collaborating in
partnerships: a focusing on partnerships with vulnerable populations. a community
Canadian case study. The Partners in Community Health Research is a 6-year health project
Evaluation & Program training program that seeks to combine research,
Planning 30 training, and practice through the work of its "learning
(2) 115-24. clusters".
*Flaskerud and USA This article demonstrates the use of Participant- Relates to  Participant-focused research (PFR) includes the "subjects" as full partners in the research
Anderson (1999) Focused Research in disseminating the results or involvement of process. As such, participants share in the products or outcomes of research. PFR goes beyond
Disseminating the products of study to the participants through two low-income the traditional research approach of disseminating findings to other scientists and clinicians and
results of participant- examples of long-term research projects conducted in Latina women includes participants and community residents in sharing the skills, knowledge, and resources of
focused research. Los Angeles. The first example is a community-based and young the study with the objective of empowering the participants.
Journal of Transcultural study of HIV prevention with low-income Latina people in
Nursing, 10(4):340-9. women. The second example is an ethnographic study community
of health concerns and risks among adolescents in focused
juvenile detention. These examples provide two research
approaches to dissemination of research findings and
benefits to the participants and the community.
Founds (2007) USA Research participation during pregnancy. Qualitative Women in  Five categories of themes related to participant-centred research: participation in this study,
Participating in research study of women's and providers' experience of breech labour and factors impeding women's participation, factors impeding clinical research, development of a
for pregnancy birth. healthcare staff participant-centred intervention, and improvement of a pregnancy research infrastructure.
complicated by breech.  Gauging research protocols to fit questions of concern, women's and providers' experiences, and
Health Care for Women practice settings supports participant-centred pregnancy risk reduction research that could
International 28(6) 573- decrease maternal mortality.
89.
*France (2000) Youth UK Draws lessons from a study involving young people as Young people  Involving young people as co-researchers can help to recruit and engage other young people in a
researching youth: the co-researchers as co- study.
triumph and success researchers
research project. York:
138
Joseph Rowntree
Foundation.
Fry and Dwyer (2001) Australia Injecting drug user motivations as research participants. Injecting drug  IDU research participation reasons were consistent with motivational themes such as economic
For love or money? An users across six gain (46%), expression of citizenship (38%), altruism (19%), personal satisfaction (17%), drug
exploratory study of Convenience sampling facilitated by recruitment suburbs in user activism (16%) and seeking information or assistance (5%). Most respondents (58%) cited
why injecting drug users notices distributed through needle and syringe Australia reasons where the primary beneficiaries of participation were other individuals or groups
participate in research. programmes (NSPs), and snowballing within peer (n=154) (citizenship, altruism, drug user activism) or both self and others.
Addiction 96 (9) 1319- networks. Interviewer-administered survey including  IDU motivations for research involvement appear to be multi-dimensional, rarely motivated by
25. questions about socio-demographics, drug use and economic gain alone, and not necessarily defined by direct benefits or gains to themselves.
main reasons for participating in research. These findings are relevant to the question of IDU research payment ethics.
Fudge et al. (2007) UK Review of published reports of studies which involved Relates to the  Barriers to involving older people were: cultural divisions, language barriers, research skills
Involving older people older people in commissioning, prioritizing, designing, involvement of capacity, ill health, time and resources.
in health research. Age conducting or disseminating research. Thirty studies older people in  Four of the studies had been formally evaluated to identify the impact of involvement.
& Ageing 36 (5) 492- were included and classified according to the stage in research Evaluation focussed on the impact on participants rather than on impact on research processes
500. the research process in which older people were activities) and outcomes. Benefits to participants included: increased knowledge, awareness and
involved. confidence, meeting others in similar situations, empowering older people to become active
in their community regarding decisions/policies which affect them.
 Factors hindering the involvement of older people in research were the same as reported factors
hindering involvement of younger people, suggesting that age, per se, is not a barrier. To
demonstrate the impact of user involvement on research quality, the definition of user
involvement requires clarification, and systematic evaluation of research involving older people
needs to be developed.
*Ghersi (2002) Making Australia The core work of the Cochrane Collaboration is the Relates to user  It has been difficult to achieve consumer involvement across all parts of the Cochrane
it happen: Approaches conduct of systematic reviews dealing with important involvement in Collaboration. Different approaches have been tried and different levels of success have been
to involving consumers health care questions. It is the policy of the the work of the achieved.
in Cochrane reviews. Collaboration to involve consumers in all stages of the Cochrane  Whereas some CRGs have embraced the concept and been fortunate in their ability to identify
Evaluation & the Health review process: from refining and prioritization of Collaboration willing and able contributors, others have not been as successful. For example, protocols and
Professions. 25 (3) 270- research questions through protocol design, to review reviews are still being published in The Cochrane Library that have not been refereed by at least
283. conduct and ultimately dissemination of results. one consumer.
 The aims and expectations of consumers in the Cochrane Collaboration have much in common
with those of its health care practitioners and researchers. All of these people want to help the
Collaboration to achieve its goal of helping people make well-informed decisions about health
care. Although facilitating consumer involvement can be time and resource consuming, the
partnerships made between consumers and researchers have the potential to be productive and
rewarding.
Glasby and Littlechild UK Discussion of the possible benefits of patient Relates to the  While clinical review instruments are an important tool for researchers investigating the
(2001) Inappropriate participation in research, using findings from a study in involvement of prevalence of inappropriate hospital admissions, they are only one way of approaching the topic
139
hospital admissions: Birmingham, which sought to involve individual older older people in and should not be used in isolation. On their own, these instruments provide a distorted and
patient participation in people in a research study into emergency hospital research about flawed picture which threatens to oversimplify a much more complex reality. To compensate for
research. British Journal admissions. hospital these limitations, researchers and practitioners need to make use of the expertise of their patients,
of Nursing 10 (11) 738- admissions supplementing exiting research methods with approaches that seek to involve patients.
41.  Research discussed in this paper into the emergency hospital admission of older people has
demonstrated that individual patients have an important contribution to make to an
understanding of the circumstances leading up to their admission, thus contributing significant
data which would not have been available without a participatory approach.
 Researching complex problems often requires a combination of approaches, and practitioners
should be suspicious of any methods which appear to provide clear-cut, unambiguous, easy
answers to anything as difficult to investigate as inappropriate hospital admissions.
Glogowska et al. (2001) UK Reports a study of the attitudes of parents whose Parents of 20  Parents tended to talk about the meaning of their participation, their motivation for taking part
Who's afraid of the children took part in an RCT. Data were collected from children taking and their understanding of the nature of the trial. These views and experiences can help to inform
randomised controlled the parents of children using qualitative in-depth part in clinical future recruitment procedures and information that is provided to parents.
trial? Parents' views of interviews. trials
an SLT research study.
International Journal of
Language &
Communication
Disorders 36 Suppl:
499-504.
Goldstein et al. (1998) US A benchmark exercise evaluating larger academic Research  The largest programs were those in which there was both an NIEHS centre and a public health
Size characteristics of programs in human environmental health sciences. programmes in graduate education program. This suggests that there is synergy between environmental health
larger academic human These programs are located at schools of public health US sciences research and involvement in public and community health.
environmental health and at other institutions that have NIEHS Centres of
programs in the United Excellence.
States. Environmental
Health Perspectives 106
(10) 615-7.
*Goodare and UK Editorial review of developments to involve patients in Relates to the  Uses trends in research commissioning and review to argue that besides journal editors insisting
Lockwood (1999) clinical research. involvement of on informed consent from trial participants, they should set new standards for consumer
Involving patients in patients in consultation at all stages of clinical research submitted for publication. Wherever possible,
clinical research clinical research consumer peer review should be sought. Where there has been no consumer input into the
improves the quality of and peer review original design, journal editors should seek consumers' commentaries on published papers.
research, British
Medical Journal 319:
724-725.
Griffin et al. (2003) USA This study examined participant reactions to different People who  Participation was very well tolerated by the vast majority of the trauma survivors. Participants
Participation in trauma trauma assessment procedures and participant's views have generally found that the assessment experience was not distressing and was, in fact, viewed as an
140
research: is there about participation experienced interesting and valuable experience.
evidence of harm? trauma  The findings suggest that trauma survivors are not too fragile to participate in trauma research
Journal of Traumatic (domestic even in the acute aftermath of a traumatic experience.
Stress 16 (3) 221-7. violence
(n=260), rape
(n=108), and
physical assault
(n=62)
*Grocott et al. (2007) A UK A case study investigating the perceptions of People with  The authors argued that failure to engage users in device development affects the quality of
model of user individuals with Epidermolysis Bullosa (EB), their lay chronic wounds clinical outcomes. A model of user engagement is presented, turning unmet needs for medical
engagement in medical and professional carers into unmet needs. EB is an devices into viable commercial propositions.
device development. inherited condition affecting the skin and mucosal  There are generalisations from the case study, and the model outlined. New products for
International Journal of linings that leads to blistering and wounds. Qualitative managing EB wounds can logically benefit other groups. The model is transferable to other
Health Care Quality data are being collected to generate understanding of clinical problems, which can benefit from research and technological advances that are integral
Assurance, 20 6 484- unmet needs and wound care products. These needs are to clinical needs and care.
493. being translated into new design concepts and
prototypes. Prototypes will be evaluated in an n=1
experimental design, generating quantitative outcomes
data.
Halbert et al. (2006) USA African American smokers intentions to participate in African  Overall, 58% of respondents reported that they would be very likely to participate in research to
Intentions to participate smoking and genetics research. American male identify genetic risk factors for smoking. Greater beliefs about the benefits of participating in
in genetics research and female medical research and fewer perceptions of the limitations and risks of genetic testing had
among African adult smokers significant independent associations with reporting a high likelihood of participating in this type
American smokers. (n=128) of research.
Cancer Epidemiology,
Biomarkers &
Prevention 15 (1) 150-3.
*Hanley (2005) UK Report of a series of seminars on the topic of Seminar  Participants suggested that existing research systems presented multiple barriers to
Research as empowerment in research. participants empowerment in research. Resourcing and professionals attitudes were identified as particular
Empowerment? Report including issues, as was the meaning of evidence.
of a series of seminars service users
organised by the and researchers
Toronto Group. Joseph
Rowntree Foundation.
*Hanley et al. (2000) UK Reviews ways in which consumers might be involved Previous studies  Identifies ways in which consumers can contribute to the research processes.
Involving Consumers in in research studies. that have  Provides practical guidance to researchers about when and how to involve consumers in
Research and involved research.
Development in the consumers in
NHS. Briefing notes for research
141
researchers.
*Hanley et al. (2001) UK Reviews ways in which consumers have been involved Previous studies  Consumers have tended to contribute to randomised controlled trials to develop information for
Involving consumers in in designing, conducting and interpreting randomized that have participants or to feedback about trial participation.
designing, conducting, controlled trials. involved  Provides practical guidance to researchers about when and how to involve consumers in clinical
and interpreting consumers in trial processes.
randomised controlled randomised
trials: questionnaire controlled trials
survey. British Medical
Journal; 322: 519-23.
Happell and Roper Australia Literature review of consumer involvement in mental Relates to the  Benefits and significant barriers to consumer involvement in mental health research were
(2007) Consumer health research with a view to articulating a model to involvement of identified. However, a clear model to articulate definitions of involvement is lacking. Four
participation in mental guide this process. people with distinct levels of involvement were articulated.
health research: mental health  The identification of clearly defined models for consumer involvement in mental health research
articulating a model to problems in is important in order to facilitate collaboration and avoid tokenism. Research is required in order
guide practice. research to determine the applicability of these models within actual research projects.
Australasian Psychiatry
15 (3) 237-41.
*Hart (1992) Children's Italy Uses a study of young people's participation in Children and  Seven levels of participation from manipulation, decoration, tokenism, assigned but informed,
Participation: From research to develop a hierarchy adapted from Arnstein young people consultation and information, child initiated: shared decision with adults, to child initiated and
Tokenism to (1969) directed.
Citizenship, Innocenti
Essays no. 4, Florence,
Italy: UNICEF.
Hayley et al. (1996) UK Ethical issues and barriers to undertaking research with Relates to  Issues frequently encountered in this context include: advance directives, competence and
Ethical and legal issues nursing home residents. residents of decision-making capacity, decisions about life-sustaining treatment, resident abuse, restraints,
in nursing home care. nursing homes psychotropic medications, risk management, participation in research, and ethics committees.
Archives of Internal
Medicine 156 (3) 249-
56.
Heller et al. (1996) USA Interview study to determine how professionals can Users of mental  Persons with mental health problems have participated in various roles in research and training
Guidelines from the encourage meaningful participation of persons with health services but there are many barriers to meaningful consumer involvement that have not been adequately
consumer: improving mental health problems in research and training with experience addressed.
consumer involvement activities. of involvement
in research and training in research
for persons with mental and/or training
retardation. Mental (n=22)
Retardation 34 (3) 141-
8.
*Hickey and Kipping UK Examination of the concepts of mental health service Mental health  The model presented challenges a hierarchical view of user involvement but it is conceived of in
142
(1998) Exploring the user involvement in decision-making to service users the context of a clinical decision making where issues of professional authority and control are
concept of user consumerist/democratic concepts of involvement. The considerably different.
involvement in mental approaches are linked through a 'participation
health through a continuum'.
participation continuum.
Journal of Clinical
Nursing, 7(1):83-8.
Australia There have been concerns raised regarding the ethical Family  The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of
*Hudson (2003) The merit of involving dying patients and family caregivers caregivers of being involved in research and the majority (88.9%) cited no negative aspects associated with
experience of research as research participants. This study sought feedback patients research participation. Findings of the study suggest that it is pertinent to invite family
participation for family from 103 primary family caregivers who had receiving caregivers to be involved in palliative care research. Moreover, this study demonstrated that not
caregivers of palliative participated in a longitudinal research project. palliative care only is it probably safe for family caregivers to be involved in research but also that many
care cancer patients. Caregivers were sent a questionnaire regarding the (n=103) participants actually derive benefits from participating.
International Journal of benefits and negative aspects associated with
Palliative Nursing, participating in research while also supporting or
9(3):120-123. having supported a relative dying of cancer.
Hughes Halbert et al. USA Description of the methods used to develop an Health  A significant investment of time is needed to identify a community partner for prostate cancer
(2006) Developing an academic-community partnership between investigators researchers and research and develop an effective partnership.
academic-community at the University of Pennsylvania and members of the community
partnership for research Philadelphia chapter of the National Black Leadership members of the
in prostate cancer. Initiative on Cancer for CBPR on quality of life Philadelphia
Journal of Cancer following prostate cancer diagnosis. chapter of the
Education 21 (2) 99- National Black
103. Leadership
Initiative on
Cancer
Israel et al. (2001) The USA Description and analysis of the process of establishing, Members of the  Given the complex set of determinants of health status, the disproportionate burden of disease
Detroit Community- implementing, and evaluating the Detroit Community- Detroit experienced within marginalized communities, and the limited effectiveness of traditional
Academic Urban Academic Urban Research Center (URC), a Community- prevention research, particularly within communities of color, there have been growing calls for
Research Center: community-based participatory research (CBPR) Academic more comprehensive and participatory approaches to public health research and practice.
development, partnership involving community-based organisations, Urban Research
implementation, and a local health department, academia, and an integrated Center
evaluation. Journal of health care system.
Public Health
Management & Practice
7 (5) 1-19.
Joffe et al. (2006) USA The ethical ideal of respect for all persons supports Children being  The requirement for affirmative agreement is difficult to apply. This is especially true in
Involving children with respect for the developing autonomy of children and invited to childhood cancer research, where complex treatment- and research-related decisions often arise
143
cancer in decision- adolescents in decisions about their participation in participate in against a background of acute, serious medical illness and extraordinary psychological and
making about research research. In the United States, this requirement is research emotional strain.
participation. Journal of written into federal regulations governing paediatric  Members of the Children's Oncology Group (COG), the major National Cancer Institute–
Pediatrics 149 (6) 862- research. These regulations define assent as “a child's supported pediatric cooperative group, report both variability in local assent practices and
868. affirmative agreement to participate in research” and conflict with institutional review boards (IRBs). As a result, in 2003 the COG Bioethics
further specify that “mere failure to object should not, Committee convened an international multidisciplinary task force comprising clinicians,
absent affirmative agreement, be construed as assent.” investigators, parent advocates, ethicists, and a lawyer to develop guidelines regarding assent.
In the clinical context, considerable uncertainty attends After several task force meetings, numerous drafts, and public comment by the membership, the
the degree to which children should be encouraged to COG Executive Committee approved these guidelines in January 2005.
participate in treatment decisions. Assent for research  The principles presented in this paper and the solutions that are suggested may help clarify and
adds a layer of complexity, because research improve decision making for children in diverse clinical research settings.
participation is generally considered optional.
Jones et al. (1995) UK Involvement of individuals in the community who are Well people  There are a range of ethical issues pertinent to quantitative and qualitative research
Primary care research not seeking medical care and to the impact of research accessing GP methodologies in primary care research.
ethics. British Journal of participation on relationships between general surgeries
General Practice 45 practitioners and their patients.
(400) 623-6.
Kaminsky et al. (2003) USA Involvement of people in research who are living with People living  Clear response pattern differences emerged between those with prior research experience and
Influences upon schizophrenia. Interview study of people living with the with the illness those without such experience
willingness to illness of schizophrenia about their attitudes, beliefs, of
participate in and experiences related to psychiatric research. Half schizophrenia
schizophrenia research: had prior personal experience of research participation. (n=63)
an analysis of narrative
data from 63 people
with schizophrenia.
Ethics & Behavior 13
(3) 279-302.
Kassam-Adams and USA Questionnaire study of reactions of injured children and Injured children  Fifty-two percent of children and 74% of parents were glad they had participated; 77% of
Newman (2005) Child their parents to research participation. (aged 5-17) children and 90% of parents felt good about helping others. Self-reported distress from study
and parent reactions to (n=203) and participation was uncommon (5% of children and parents). Child age was associated with more
participation in clinical 200 parents positive appraisals of the research process and with greater trust in and information about
research. General elements of informed consent.
Hospital Psychiatry 27
(1) 29-35.
*Kelson (1999) UK This review aimed to identify the extent to which the Replies were  CRGs varied in the extent to which they had recruited consumer members: almost one third of
Consumer collaboration, Cochrane Collaboration involves consumers (patients, received from respondents said their CRG did not have any consumer members.
patient-defined carers, patient and non-patient members of 35 Cochrane  There was no apparent consensus across CRGs on the importance attached to identifying and
outcomes and the patient/consumer organisations) as members of Review Groups, collecting information on patient-defined outcomes or on integrating such information into their
144
preparation of Cochrane Cochrane Review Groups (CRGs); to explore the a response rate activities.
Reviews. Health emphasis CRGs place on identifying and collecting of 83% and 33  Differences between CRGs may inform discussions as to whether and how the Cochrane
Expectations; 2: 129– information on outcomes identified by patients as being questionnaires Collaboration might address the issue of patient-defined outcomes in the future.
135. important indicators of quality and effectiveness of (79%) were
treatment and care (‘patient-defined outcomes'). A completed.
postal questionnaire designed by The College of
Health, a UK patient organisation, was sent in January
1998 to all CRGs registered with the Cochrane
Collaboration on 1 January 1998 (n = 42).
Kim et al. (2002) USA Assessment of the effects of cognitive and decisional People with  There were no differences in willingness to participate found between the Alzheimer's and the
Impaired decision- impairment on willingness to participate in research mild to healthy comparison subjects for three of the four hypothetical protocols.
making ability in among persons with Alzheimer's disease. Cognitive mild/moderate  In both groups, willingness declined as risk increased. Within the Alzheimer's disease group, the
subjects with status, decision-making ability, and willingness to Alzheimer's presence of greater decisional impairment tended to predict less willingness to participate in
Alzheimer's disease and participate in four hypothetical research protocols of disease (n=34) research, even after adjusting for cognitive impairment, gender, and education.
willingness to varying risk/benefit profiles were measured. and 14 healthy
participate in research. older people
American Journal of
Psychiatry 159 (5) 797.
Knoppers and Joly USA Discussion paper on medical research, arguing it is a Not applicable  Public trust and public participation in research demand clear stewardship as well as transparent
(2007) Our social public good. Genomics crosses all species, thereby and accountable oversight.
genome? Trends in requiring a global approach that respects human rights  Characterizing fundamental genomic data as a public resource might counterbalance the current
Biotechnology 25 (7) and public health priorities. overemphasis on individual rights but this will not be simple. It is only through an attachment to
284-8. justice and solidarity that the dignity and well-being of persons, both as humans and as citizens,
can truly be fostered.
Kuo et al. (2006) USA Exploration of community-research partnerships Health  Factors attributed to the success of this project included shared objectives, addressing the
Community-research between university researchers and communities of researchers, concerns about collaboration among academic and community partners, inclusion of non-
collaboration between non-physician clinicians, drawing on experiences from individual traditional viewpoints about healthcare policy, and participation by the acupuncturist community
researchers and the Licensed Acupuncture Collaborative Study in community in performing the research.
acupuncturists: California. The study design used a project- acupuncturists  The authors suggest that these activities helped to overcome mistrust and perceived
integrating a management approach based on the core principles of and members of power differences between researchers and the acupuncturist community.
participatory research community-based participatory research: 1) mobilizing state
approach in a statewide shared expertise and resources to address issues of community
survey of licensed concern; 2) sharing power in the decision-making organisations
acupuncturists in process; and 3) promoting mutual ownerships of
California. Ethnicity & resources and products derived from the collaboration.
Disease 16 (1 Suppl 1) A project infrastructure involving the sharing of study
S98-106. responsibilities across university researchers, individual
acupuncturists, and state community organisations was
developed and cultivated over a three-year project
145
period.
Lesser et al. (2005) USA Description of two-phase community and academic Latino teen  Special issues that needed to be addressed before formation of a productive academic-
Respecting and collaboration funded by the California Collaborative parenting community-based organisation research partnership, include integrating a dominant theoretical
protecting our Research Initiative to develop and test the feasibility of couples model used in health education with principles of practice derived from clinical experience. The
relationships: a a HIV prevention program relevant to the needs of the first phase of the project that helped to inform the development of the HIV prevention program
community research population of inner-city Latino teen parenting couples for couples; examples from the intervention pilot study (Phase 2) that illustrate both the
HIV prevention program and realistic for implementation in community settings. intervention strategies and the young participants' responses to the curriculum; and the feasibility
for teen fathers and of program implementation and evaluation in a community setting.
mothers. AIDS
Education & Prevention
17 (4) 347-60.
Liberati (1997) UK Discussion of consumer participation in research and Relates to  Suggests that the quality and relevance of much clinical research fall short of patients' needs.
Consumer participation health care participants in Research priorities do not flow from a transparent process where the views of all the relevant
in research and health research stakeholders are equally considered. The presence of lay people on research ethics committees is
care. British Medical common but there is a widespread belief that they are rarely influential.
Journal 315 (7107) 499.  Without such a partnership research is unlikely to become more productive or relevant. The
challenge is for the medical profession to accept this message and develop alliances with
consumers to move forward toward a wider recognition of the uncertainty and weaknesses
of medicine and the biases in the process of setting research priorities.
Lidz and Appelbaum USA Therapeutic misconception occurs when a research Participants in  Research and clinical care involve different standards for how the patient/subject is to be treated.
(2002) The therapeutic subject fails to appreciate the distinction between the clinical research The confusion of the two often leads to profound misunderstandings on the part of the
misconception: imperatives of clinical research and of ordinary patient/subject.
problems and solutions. treatment, and therefore inaccurately attributes  A method for describing to patients/subjects the differences between research and treatment is
Medical Care 40 (9 therapeutic intent to research procedures. proposed as a potential solution to the therapeutic misconception. Research is needed to
Suppl) V55-63. determine whether this or any other change in the nature of the disclosure is effective in reducing
the therapeutic misconception.
Lindenmeyer et al. UK Assessment of the benefits of involving health-care Researchers  Involvement of users in research was generally seen as contributing to effective and meaningful
(2007) Assessment of users in diabetes research. Qualitative case study, working with research. An important contributor to the group's success was its longstanding nature, enabling
the benefits of user semi-structured interviews were conducted with people who users to gain more insight into research and form constructive working relationships with
involvement in health researchers who had worked extensively with the have diabetes researchers. The user-led nature of the group asserted itself, especially, in the language used
research from the group. During regular meetings of the Research User during group meetings. A partial shift of power from researchers to users was generally
Warwick Diabetes Care Group, members discussed their views of the group's acknowledged.
Research User Group: a effectiveness as part of the meeting's agenda.  Users' main contribution was their practical expertise in living with diabetes, but their
qualitative case study. involvement also helped researchers to remain connected to the 'real world' in which research
Health Expectations 10 would be applied. While the group's work fulfilled established principles of consumer
(3) 268-77. involvement in research, important contributions relying on personal interaction between users
and researchers were hard to evaluate by process measures alone.
Ma et al. (2004) USA Community-based participatory research on tobacco Members of the  Participation is perceived as relating to facilitating factors in partnership building, and
146
ATECAR: An Asian awareness among Asian Americans in the Delaware Asian American implications of employing this model in this ethnically and racially diverse population.
American community- Valley region of Pennsylvania and New Jersey. community
based participatory
research model on
tobacco and cancer
control. Health
Promotion Practice 5 (4)
382-94.
MacQueen and Cates USA Discussion and development of a framework for Not applicable  The framework integrates five elements: advocacy and policy, community participation,
(2005) The multiple prevention science clinical research that explicitly links prevention research, acceptability research, and operations and program development. These five
layers of prevention the identification of prevention needs to the elements are often viewed as disparate agendas, but an effective prevention science research
science research. implementation of research results in public health enterprise requires that they be coordinated and integrated through all research stages--from the
American Journal of programs. conceptual, to the experimental, and ultimately to the applied. Examples are provided of how
Preventive Medicine 28 this integration can be achieved from reproductive health and HIV prevention.
(5) 491-5.
Marshall et al. (2007) A UK Literature review of consumer involvement and Relates to  Searches of three databases revealed 13 studies that sought to investigate consumer perspectives.
review of consumer whether evaluations were informed by recovery research on Only one study asked consumers about experiences of recovery. Most evaluations did not
involvement in perspectives. patients adequately assess consumers' views, and active consumer participation in research was rare.
evaluations of case recovering from
management: illness
consistency with a
recovery paradigm.
Psychiatric Services 58
(3) 396-401.
Maslin-Prothero (2003) UK Discussion of work undertaken for the NHS National Not applicable  The paper identifies key issues that nurses and midwives must consider to ensure effective user
Developing user Cancer Research and Development Programme and (relates to participation in research and practice.
involvement in research. NHS Executive Trent. It includes reflection on the recruitment of
Journal of Clinical experience of user involvement in health care research participants to
Nursing 12 (3) 412-21. drawing on current UK health policy documents and an breast cancer
examination of the factors affecting recruitment to trials)
breast cancer clinical trials, and contributes to the
debate on recruitment to clinical trials.
Matthews et al. (2007) UK Discussion of national diabetes network to support Not applicable  Clinicians need to be willing to take a proactive view about research studies, and to encourage
The UK Diabetes clinical research. The network will facilitate patients to adopt a positive and altruistic attitude towards trial participation.
Research Network-an recruitment into clinical trials and has been widely
opportunity and a welcomed by clinicians. The authors argue that a
challenge. Diabetic change in attitude towards clinical trials and research is
Medicine 24 (1) 7-9. required to encourage participation and contribution of
data.
147
McCallum and Arlien USA Recruitment of older African-Americans for a psycho- African  It is important to hold pre-recruitment community focus groups based upon the tenets of the
(2006) Enhancing the physiological study using the matching model of Americans matching model, a community-based partnership research model can help to achieve this.
matching model of recruitment proposed by Levkoff, Levy, and Weitzman
recruitment through (2000).
focus groups. Aging &
Mental Health 10 (3)
312-8.
McClure et al. (2003) USA Assessment of public views on emergency exception to Attendees at  Most (88%) believed that research subjects should be informed prior to being enrolled, while
Attitudes of emergency informed consent in resuscitation research, public two trauma 49% believed enrolling patients without prior consent in an emergency situation would be
department patients and awareness of such studies, and effective methods of centre acceptable and 70% (369) would not object to be entered into such a study without providing
visitors regarding community consultation and public notification. emergency prospective informed consent.
emergency exception departments  Most respondents disagreed with foregoing prospective informed consent for research
from informed consent Face-to-face survey in two academic Level I trauma (n=530) participation even in emergency situations; however, many would be willing to participate in
in resuscitation research, centre emergency departments (eds). studies using emergency exception from informed consent. Most respondents would not attend
community consultation, community meetings, and would prefer to rely upon the media for information. Very few were
and public notification. aware of emergency exception from informed consent studies in their community. This suggests
[erratum appears in that current methods of community notification may not be effective.
Acad Emerg Med. 2003
Jun;10
(6)690]. Academic
Emergency Medicine 10
(4) 352-9.
McCormick et al. (2004) UK Review of current practices and general models of Researchers,  Public involvement has major ramifications for the democratization of science and the
Public involvement in public involvement in research and constructs a program construction of knowledge by teaching lay people about science and sensitizing researchers to
breast cancer research: prototype. officers, and lay concerns of the public.
an analysis and model people with  There is growing support on the part of scientists and government agents for public involvement.
for future research. Interviews were used to understand the obstacles, breast cancer
International Journal of processes, and benefits of research.
Health Services 34 (4)
625-46.
Metzler et al. (2003) USA Description of key activities integral to the Members of 3  Activities critical in partnership development include sharing decision-making, defining
Addressing urban health development of 3 community-based participatory urban research principles of collaboration, establishing research priorities, and securing funding.
in Detroit, New York research partnerships. centres  Challenges included the time needed for meaningful collaboration, concerns regarding
City, and Seattle sustainable funding, and issues related to institutional racism.
through community-
based participatory
research partnerships.
American Journal of
Public Health 93 (5)
148
803-11.
Minkler et al. (2006) USA Discussion of a community-based participatory 1000  A variety of health promoting environmental and small policy changes were undertaken ranging
Sowing the seeds for research collaboration between researchers at the households from a bill restricting indoor smoking in public places to an initiative to develop a system of
sustainable change: a Indiana University School of Nursing and the Healthy trails throughout the county to promote physical fitness and decreased reliance on automobiles.
community-based Cities Committee of New Castle. Involving a door-to-
participatory research door health survey.
partnership for health
promotion in Indiana,
USA and its aftermath.
Health Promotion
International 21 (4) 293-
300.
Minogue et al. (2005) UK Study involving service user and carer researchers Users and carer  The study identified the range and extent of consumer involvement and the impact of this on
The impact of service working alongside professional researchers, to examine members of a consumers and the Trust. Service users and carers were involved in a range of projects, mainly
user involvement in the development of one service user and carer research research group on the level of consultation or collaboration. The benefits for consumers were principally on a
research. International group in a mental health Trust. in a mental personal level and included gaining knowledge and experience, improved sense of well-being,
Journal of Health Care health Trust self esteem, and confidence.
Quality Assurance Literature review on consumer involvement in  The benefit for the Trust was in having a service user perspective and focus. However, there is a
Incorporating research, a review of user involvement in research in tendency to omit service users from planning and setting priorities.
Leadership in Health South West Yorkshire Mental Health NHS Trust, a  The study pointed to the need to build the evidence base on consumer involvement in research,
Services 18 (2-3) 103- survey of consumers and NHS staff in the Trust, and a particularly in terms of how consumers can impact on setting research priorities and selecting
12. skills audit and training needs analysis of consumers. appropriate methods. It identifies the need for more training for consumers and for NHS staff
and for a more coherent strategy.
Molyneux et al. (2005) Kenya Ethical dilemmas in biomedical research, especially in  The findings revealed the community's difficulty in distinguishing research from clinical
'Even if they ask you to vulnerable populations. investigations conducted in clinical settings. There was a spectrum of views regarding perceived
stand by a tree all day, appropriateness of consent procedures, in part because of difficulty in disentangling clinical from
you will have to do it Qualitative study with groups of community members research aims, and because of other challenges to applying consent in practice.
(laughter)..!': living in the rural study area of a large research unit in  Debates between community members highlight the inadequacy of simplistic assumptions about
community voices on Kenya. Discussions were facilitated by three research community members' views on informed consent, and the complexity of incorporating lay
the notion and practice study vignettes outlining one field-based and two opinions into biomedical research. Failure to appreciate these issues risks exaggerating
of informed consent for hospital-based studies being planned or taking place at differences between settings, and underestimating the time and resources required to ensure
biomedical research in the time. In addition to gathering general views about meaningful community involvement in research processes. Ultimately, it risks inadequately
developing countries. the aims and activities of the research unit, questions responding to the needs and values of those on whom the success of most biomedical research
Social Science & focused on whether consent should be sought for depends. Although compliance with community views does not necessarily make the research
Medicine 61 (2) 443- studies, and if so from whom (chiefs, elders, more ethical, it is argued that community opinions on local issues and practices should inform
54. men/women, children), and on ascertaining whether ethical decision-making in health research.
there are any special concerns about the physical act of
signing consent forms.
149
Morgan et al. (2005) USA Description of development of a barrier scale regarding 5,000  Comparison of demographics and perceived barriers to participation were completed. Those who
Barriers to research willingness to participate in medical research. Factor households were classified as younger than the median sample age and male scored significantly lower on
participation identified analysis was utilized to isolate a "barriers to from a sampling the barrier scale, indicating more barriers to participation in health care research. Those with the
by rural people. Journal participation in research" scale. frame of 45,000 highest perception of barriers were among the least willing to participate as research subjects.
of Agricultural Safety & property owners The findings inform assumptions that researchers make about barriers to research, and strategies
Health 11 (4) 407-14. in a rural are suggested to remove such barriers. Opening the doors to inclusion of rural people in health
upstate New research studies will ultimately result in improved individual and community health in rural
York county places.
Nelson and Merz (2002) USA This article explores the vulnerability of research Not applicable  Voluntariness is viewed as an issue of self-control. Threats to voluntariness can arise from
Voluntariness of subjects either to undue influence or to coercion. (relates to vulnerabilities of potential subjects as well as from characteristics of the researcher, the
consent for research: an potential researcher's acts, and the research setting. Moral concerns about potential influences may be
empirical and Empirical work that relates to voluntariness is used to participants in assessed by the likelihood that they will control or dominate a potential participant's decision to
conceptual review. illustrate the conceptual material. research) participate in research.
Medical Care 40 (9
Suppl) V69-80.
Newman and Kaloupek USA Review of conceptual and practical issues regarding Involving  Current, limited evidence suggests that most individuals make favourable cost-benefit appraisals
(2004) The risks and potential risks and benefits of participation in trauma- people who regarding their participation. Although a subset of participants report strong negative emotions
benefits of participating related research. have suffered or unanticipated distress, the majority of these do not regret or negatively evaluate the overall
in trauma-focused trauma in experience.
research studies. Journal research
of Traumatic Stress 17
(5) 383-94.
Noe et al. (2007) The USA Discussion of community-based participatory research 1066 American  Many factors significantly increased odds of participation and included the study's being
influence of community- principles might influence an individual's decision to Indian students conducted by a tribal college/university or national organisation, involving the community in
based participatory participate in research. from three tribal study development, an American Indian's leading the study, addressing serious health problems
research principles on Using vignettes that described various types of research colleges/ of concern to the community, bringing money into the community, providing new treatments or
the likelihood of students were surveyed to ascertain the extent to which universities services, compensation, anonymity, and using the information to answer new questions.
participation in health respondent age, gender, education, cultural affiliation,  Decreased odds of participation were related to possible discrimination against one's family,
research in American tribal status, and prior experience with research may tribe, or racial group; lack of confidentiality; and possible physical harm.
Indian communities. interact with the implementation of critical CBPR
Ethnicity & Disease 17 principles to increase or decrease the likelihood of
(1 Suppl 1) S6-14. participating in health research.
Norris et al. (2007) USA Community-based participatory research (CBPR) is Health  Key challenges for the community side include understanding: (1) the needs of the academic
Partnering with ideally a collaborative approach to research that researchers and partner; (2) how to assess whether there are shared values, goals, and research priorities; (3) the
community-based equitably involves all partners in the research process community limits of one's organisation and competing demands; (4) how to use the partnership to build
organisations: an and recognizes the unique strengths that each brings. members and community capacity to conduct research; and (5) the value added for the community from
academic institution's minority ethnic involvement in research versus the risks inherent in participation.
evolving Review of the processes, strategies, and activities elders  Key challenges for the academic side of the partnership include understanding: (1) what
150
perspective.[erratum around the interface of community-academic community is; (2) the value added by a true partnership; (3) how to build effective relationships;
appears in Ethn Dis. partnerships using a CBPR model focused on (4) what a balanced collaboration with equal power sharing entails; (5) that community partner
2007 Spring;17 (2)205]. addressing healthcare issues for minority elders. goals may not mirror academic goals; (6) the capabilities and limits of community partners; and
Ethnicity & Disease 17 (7) how to effectively use a community advisory board (CAB).
(1 Suppl 1) S27-32.  Building relationships and effective collaboration require time, patience, physical presence,
respect, and commitment-elements frequently in short supply in a busy academic environment.
O'Donnell and Entwistle UK Postal questionnaire survey and in-depth telephone Health research  Many UK funders of health-related research are adopting a policy of promoting consumer
(2004) Consumer interviews with UK funders of health-related research funders involvement in research projects. Telephone interviews revealed they have several reasons for
involvement in research to explore whether, why and how they promote doing so, and that they vary in the ways they encourage and support researchers to involve
projects: the activities of consumer involvement in research projects. consumers. For some, descriptions of consumer involvement in a research proposal are
research funders. Health important for project funding decisions. They recognized a need for flexibility when assessing
Policy 69 (2) 229-38. consumer involvement in different contexts.
*Oliver et al. (2001) UK In a short action research pilot study, the authors Users involved  When seeking research topics, face-to-face discussion with a consumer group was more
Involving consumers in involved consumers in all stages of the Health in HTA productive than scanning consumer research reports or contacting consumer health information
a needs-led research Technology Assessment (HTA) Programme: programme services.
programme: A pilot identifying and prioritizing research topics;  Consumers were willing and able to play active roles as panel members in refining and
project. Health commissioning and reporting research; and prioritizing topics, and in commenting on research plans and reports.
Expectations, 4(1):18- communicating openly about the programme. The pilot  Training programmes for consumer involvement in service planning were readily adapted for a
28. study drew on the experience of campaigning, self-help research programme.
and patients' representative groups, national charities,  Challenges to be overcome were cultural divides, language barriers and a need for skill
health information services, consumer researchers and development amongst consumers and others. Involving consumers highlighted a need for
journalists for various tasks. The consumer literature support and training for all contributors to the programme.
was explored as a potential source for research  Consumers made unique contributions to the HTA Programme. Their involvement exposed
questions, and as a route for disseminating research processes which needed further thought and development. Consumer involvement benefited
findings. Training, one-to-one support and discussion from the National Co-ordinating Centre for Health Technology Assessment (NCCHTA) staff
were provided. A reflective approach included being comfortable with innovation, participative development and team learning. Neither
interviews with consumers, co-ordinating staff, external recruitment nor research capacity were insurmountable challenges, but ongoing effort is required
observers and other programme contributors, document if consumer involvement is to be sustained.
analysis and multidisciplinary discussion (including
consumers) amongst programme contributors.
Olson et al. (1997) Canada Literature review using the National Cancer Institute of Participants in  Interventions designed to promote participation in screening programs have not been effective.
Promotion of breast Canada (NCIC) cancer control framework to review breast cancer Involvement of the target community, however, increased success and sustainability.
cancer screening in research on participation in breast cancer screening screening  Barriers to initial participation within screening programs include alternative sources of
communities: a research programs and identify areas for further study. programmes in screening and the lack of funds to screen all eligible women. Studies show that participation
agenda. Cancer Canada decreases with successive screening rounds.
Prevention & Control 1  The priorities for study are development of: a theoretical framework for recruitment strategies, a
(3) 213-21. method to capture all Canadian screening results including those performed through provincial
health insurance plans and a mechanism to deliver screening to all eligible Canadian women.
Parker et al. (1998) USA Assessment of a lay health advisor approach in an Participants in a  Urban context affects the design and implementation of the intervention. A participatory action
151
Detroit's East Side urban area. This article describes the implementation of health worker research approach is useful as in the context and history of a community in designing a health
Village Health Worker the East Side Village Health Worker Partnership, a lay participant education intervention, and the importance of recognizing and considering the differences
Partnership: health advisor intervention, in Detroit, Michigan, and initiative between rural and urban settings when designing a health education intervention.
community-based lay notes how participatory action research methods and
health advisor principles for community-based partnership research
intervention in an urban are being used to guide the intervention.
area. Health Education
& Behavior 25 (1) 24-
45.
Paterson (2004) 'Take UK This investigation set out to learn about consumer Letter or e-mail  Literature search was combined with written and oral responses from key people and
small steps to go a long involvement in complementary medicine research from contact was organisations in the UK. The overall level of consumer involvement was low but participants
way' consumer those who have experience of practice in this area. made with 59 provided examples of experiences of consumer involvement in commissioning, designing,
involvement in research key people and carrying out, and disseminating research.
into complementary and organisations in  Clear roles and tasks and a consumer-friendly research environment, enabled consumers to
alternative therapies. complementary contribute, gain confidence, and gradually widen their areas of involvement. There appears to be
Complementary medicine and no single 'right way' for researchers and consumers to work together, but with experience and
Therapies in Nursing & 43 people mutual respect researchers became increasingly enthusiastic about the value of the consumer
Midwifery 10 (3) 150- responded. perspective.
61. Eighteen
respondents
were
interviewed.
Peddie et al. (2006) UK Women's motivations for participating in a study on Women who  Reasons for participating in the study included: (1) altruism; (2) appreciation/gratitude for care
Research as a decision making at the end of in vitro fertilization have undergone received; (3) the need to debrief; and (4) gaining self-awareness and readjustment, which
therapeutic experience? (IVF) treatment. A mixed methods study conducted by in vitro challenged the acceptance of childlessness.
An investigation of a practising midwife had focused on women's fertilization  Reasons for using the research study as 'a therapeutic experience' in the context of failed IVF
women's participation in experiences of stopping IVF treatment after one or treatment may be attributed to: (1) access to direct clinical care and advice; (2) opportunity for self-
research on ending IVF more unsuccessful attempts, and raised awareness of reflection and rationalization; (3) acceptance of reality; (4) resolution of conflict; and (5)
treatment. Human women's motivations for participating. Thematic opportunity to unburden themselves.
Fertility 9 (4) 231-8. analysis of interview transcripts permitted issues raised
by the participants in the context of 'research as a
therapeutic experience' to be explored.
Plumb et al. (2004) USA Process evaluation of the California Breast Cancer Not applicable  The evaluation identified successes that speak to the effectiveness of the collaboration concept:
Funding community- Research Program and the Community Research (relates to empowering women to formulate and initiate research; involving underserved and hard-to-reach
based participatory Collaboration (CRC) Program, a Community-Based research with populations; addressing important and useful research questions; increasing communities' skills
research: lessons Participatory Research (CBPR) program intended to women with and expertise, and enabling lasting collaborations.
learned. Journal of foster community-researcher collaboration on all breast cancer)  The greatest weakness identified was the involvement of the broader community (beyond the
Interprofessional Care aspects of the research process, essentially placing the group/organisation involved) in these projects. Barriers included: power imbalances due to the
18 (4) 428-39. community in the centre of the research paradigm. The community's lack of experience in the dominant research funding culture; funding limits and
152
CBCRP conducted a process evaluation of the CRC award delays; and the increased service demand beyond the funding limits of the award that is
Program to assess success and identify areas for created.
improvement. The evaluation included community-
researcher collaborations and the award process.
Plummer et al. (2002) USA Surveys administered to participants and Women with  The highest concern for the growing number of women diagnosed with breast cancer in North
Making epidemiologic nonparticipants in the Carolina Breast Cancer Study breast cancer Carolina and potential environmental agents that may cause breast cancer. Negative responses
studies responsive to the (CBCS). Surveys and structured interviews were and non- were noted for time constraints related to participation and lack of familiarity with
needs of participants administered to determine women's concerns regarding participants in epidemiologic research; another concern noted was the lack of centralized information
and communities: the participation in research studies, access to health care, the Carolina regarding breast cancer treatment. These issues were addressed by (1) developing a web site that
Carolina Breast Cancer and beliefs regarding causes of breast cancer. Breast Cancer provided background information about the CBCS, summaries of published study results, and
Study experience. Study information about the etiology of breast cancer; and (2) creating a statewide, comprehensive
Environmental & breast cancer resource directory for women who need information about breast cancer
Molecular Mutagenesis diagnosis, treatment, and support. These two projects were carried out in collaboration with
39 (2-3) 96-101. breast cancer advocates, and demonstrate the important role that advocates can play in making
epidemiologic research more
responsive to the needs of communities.
*Poulton (1999) User UK Examples of two practice development projects. The User  Although the project co-ordinators were highly committed to user involvement this was only
involvement in first aimed to develop multidisciplinary audit in involvement in achieved to a limited extent.
identifying health needs primary care, attempting to involve users in defining development of  Resistance to user involvement was grounded in the fear that such involvement would increase
and shaping and health needs and determining services. The second primary care user expectations and add to the pressures of overworked primary care teams.
evaluating services: is it project used interviews with service users to assess the  Users were found to be knowledgeable about practitioner roles and how to access the care they
being realised? Journal effectiveness of a team building initiative. required.
of Advanced Nursing,
30 (6): 1286-1296.
Psillidis et al. (1997) USA Discussion of the Breast Cancer Prevention Trial Members of the  Beyond the formal responsibilities that were outlined when the board was established, the trial
Participants strengthen Patient Advisory Board as a model for a way to Breast Cancer participants serving on the advisory board also have provided inspiration and motivation for
clinical trial research: involve research study participants in an expanded Prevention Trial other participants as well as for the clinicians, researchers, and administrators conducting the
the vital role of role. Patient BCPT.
participant advisors in Members of the board initiate efforts to promote Advisory Board  The extensive contributions of the advisory board members confirm and add to the
the Breast Cancer participation and inform potential participants about the understanding of the variety of ways that clinical research participants can play a role in
Prevention Trial. trial. They help establish outreach efforts to recruit strengthening such research efforts. Further, the BCPT PAB may serve as a model strategy
Journal of Women's individuals from underrepresented populations. They for drawing on the unique resource represented by the participants in clinical trial studies.
Health 6 (2) 227-32. serve as effective spokespersons for the trial to the
media at both local and national levels, and they give
highly useful guidance to the NSABP and the NCI
regarding a variety of aspects of clinical trials.
153
Rabeharisoa (2003) The France Discussion of patient organisation the AFM Not applicable  This "partnership model" has implications for: the possible generalisation of the mode of
struggle against (Association Francaise contre les Myopathies-French (relates to an relations it establishes between patients and professionals; its effects on the steering of research;
neuromuscular diseases Muscular Dystrophy Organisation). The paper argues organisation for and its consequences for the dynamics of patient organisations movements.
in France and the that the model of the AFM's engagement in research- people with
emergence of the the "partnership model"-is original insofar as it renews Muscular
partnership model of the power relations between patients and professionals Dystrophy)
patient organisation. found in two classic models: the "auxiliary model" and
Social Science & the "emancipatory model".
Medicine 57(11)2127.
Radda et al. (2003) USA Community-based research. Discussion of successful Older adults  Important issues identified include aspects of building and sustaining partnerships; the methods
Assessing human research partnership, taking as an example a study of living in urban implemented to conduct research on sensitive topics, share resources, disseminate results and
immunodeficiency virus human immunodeficiency virus (HIV) risk among communities collaborate on programs and interventions to benefit the health and well-being of older adults.
(HIV) risk among older residents of senior housing sites in two North American
urban adults: a model cities.
for community-based
research partnership.
Family & Community
Health 26 (3) 203-13.
Reed et al. (2004) UK Discussion of issues that have arisen in three projects Older people  As nursing develops closer partnerships with older people in delivering care, it also needs to
Partnership research where older people were involved in research at develop partnerships in order to create the knowledge base for practice in a way that
with older people - different levels, from sources of data to independent challenges professional hegemony and empowers older people.
moving towards making researchers.  The process of developing partnerships in research takes place against a background of academic
the rhetoric a reality. research traditions and norms, which can present obstacles to collaboration.
Journal of Clinical
Nursing 13 (3a) 3-10.
Reeve et al. (2002) Canada People who have experienced the mental health system Community  Throughout the course of the project, these consumer researchers reflected on what they learned
From our perspective: were hired and trained as researchers in a community mental health about their research experience.
consumer researchers mental health research project.
speak about their
experience in
community mental
health research project.
Psychiatric
Rehabilitation Journal,
25(4):403-408.
154
Roberson (1994) USA Racial/ethnic groups' participation in clinical trials. African  Respondents knew little about cancer clinical trials and basically had no opportunity to
Clinical trial Americans, participate. They believed that participation in clinical trials could be beneficial. In each of the
participation. Diagnostic research was conducted as a beginning Hispanics, and three groups, however, there were cultural factors believed to influence participation. A primary
Viewpoints from phase to investigate this new area of research. Native concern was "mistrust of white people" and the feeling of being treated like "guinea pigs."
racial/ethnic groups. Residents in three Buffalo, New York, communities Americans
Cancer 74 (9 Suppl) were selected as study subjects. Data were collected via
2687-91. telephone surveys. Qualitative methods were employed
for data analysis and reporting.
Rosenbaum and Wells USA Exploration of whether altruism as reason for Participants in  Women who reported at least one altruistic reason for participation were more likely to be
(2005) Altruism as a participation in research is independently associated the Women's college educated, have a higher level of social support, and a better functional status. The
reason for participation with adherence to a medical regimen in a clinical trial. Estrogen for relationship between altruism as reason for participation and adherence was independent of other
in clinical trials was Stroke Trial sociodemographic, psychosocial, and clinical features.
independently Before randomization to estrogen or placebo, all (n=475)
associated with women were questioned about reason for participation
adherence. Journal of and baseline features that may contribute to adherence.
Clinical Epidemiology Adherence was defined as completion of at least 80%
58 (11) 1109-14. of expected pill intake during the trial.
Ross et al. (2005) UK Review of key policy literature on user involvement Older people,  There are issues related to the context and method of involvement, and the impact on research
Involving older people and participatory research methods to establish the carers, and quality and local service development in health and social care.
in research: context for a partnership research project exploring health and
methodological issues. perceptions of risk in relation to falls from the social care
Health & Social Care in perspectives of older people, carers, and health and professionals
the Community 13 (3) social care professionals. The paper reports the
268-75. methods used in developing user involvement in the
research at a number of levels, including project
management, and a consumer panel working alongside
the research team and influencing the dissemination in
local falls prevention strategies.
Salcido (1997) The Patient participation in research following acute care. 
postacute continuum:
consumer participation
& outcomes research.
Rehab Management 10
(1) 48-51.
155
Salvi et al. (2005) Inter- Systematic review of the international scientific Not applicable  Thirty-five studies met the inclusion and exclusion criteria and were included in the systematic
Systematic review of the national literature to assess the stage of development of mental (relates to review. Nine studies used quantitative techniques, 24 used qualitative techniques and two studies
role of service users as health service users involvement in research. mental health used both quantitative and qualitative techniques. While three studies were user-led, in three
researchers in mental service users other studies the users were simply consulted but did not have any active role in the research.
health studies. involvement in The remaining 29 studies were based on a collaboration between service users and professional
Epidemiologia e research) researchers.
Psichiatria Sociale 14  The involvement of mental health service users in the research process is feasible both in
(4) 217-26. quantitative and qualitative research studies. The involvement of service users in research has a
number of benefits; such research requires more accurate planning and more time than the
traditional research.
Saunders et al. (2007) UK Qualitative study using focus groups and semi- People with  Consumer review criteria to guide consumers in judging the value of research, optimal rating
Beyond scientific structured in-depth telephone interviews to collect and cancer and scales to use with these criteria and views on how consumer needs should be incorporated into
rigour: funding cancer verify information about the values held by people with community the process of judging and allocating research grants (e.g. the relative weight that should be
research of public value. cancer and the wider community with regard to members given to scientific and consumer review) have been formally identified by this research.
Health Policy 84 (2-3) research.  The findings of this study clarify consumer and community values regarding cancer research
234-42. funding and offer a means to evaluate research that address these values.
Savitz (2007) Managing USA Management of organisational-based, participatory Community  Several major funding agencies have supported research partnerships and have used a "push"
effective participatory research (OBPR) partnerships. The in-depth partnership strategy via earmarked funds for such activities.
research partnerships. exploration of participatory research is intended to  OPBR partnerships made possible through support can engage multiple entities to enhance the
Joint Commission move health system-based staff from a passive to an generalizability and potential for modeling and spread of findings.
Journal on Quality & active role in the research process and to encourage  Effective management of the research partnership should stimulate collaborative problem
Patient Safety 33 (12 executives to support and encourage research solving based on organisational priorities for shared learning and spread of research results.
Suppl) 7-15. participation. Current surveys were drawn on to create a participant survey for continuously improving and
monitoring partnership strength and synergy.
156
Schell and Tarbell USA Description of a research partnership between the The people of  Research conducted in this way--as a partnership--requires more communication, discussion, and
(1998) A partnership people of Akwesasne and researchers from the State Akwesasne and travel, but the result is mutual satisfaction and growth.
study of PCBs and the University of New York at Albany for the study of researchers
health of Mohawk polychlorinated biphenyls and the health of Mohawk from the State
youth: lessons from our youth. The study goals have been set by the scientists University of
past and guidelines for and the community members and is conducted jointly New York
our future. by these groups. The relationship is based on three
Environmental Health principles: mutual respect, mutual equity, and mutual
Perspectives 106 Suppl empowerment. These principles guided every aspect of
3: 833-40. the research process. The project goals were
determined jointly to maximize data quality and
minimize the intrusion of research activities into the
lives of community members. Data collection is
performed by research assistants who received
extensive and ongoing training in data collection
methods, and who are members of the community.
Schensul et al. (2006) USA Description of a community-based Older adults  Factors central to implementing a successful research partnership include (1) achieving
Building interdisciplinary/intersectoral study of depression and with mental commonality of purpose in study design and research and referral approaches; (2) ensuring the
interdisciplinary/intersec barriers to mental health care among older adults. health problems ability to develop, field-test and implement psychometrically rigorous and culturally and
toral research qualitatively appropriate instruments; (3) building effective management structures for
partnerships for interdisciplinary/intersectoral research partnerships; and (4) identifying, training and supporting
community-based qualified researchers to carry out a mental health study with older ethnically diverse adults.
mental health research
with older minority
adults. American
Journal of Community
Psychology 38 (1-2) 79-
93.
Scherer et al. (2007) NZ Review of the literature related to knowledge, Not applicable  Research findings indicate there are differences in adolescent and parent understanding and
Ethical issues in competence, volition, and financial compensation in the (relates to appreciation of research risks and procedures, that opinions about decision-making authority and
adolescent and parent biomedical research decision-making of children, children, physician influence for research participation are different in adolescents and parents, and that
informed consent for adolescents, and parents. adolescents and financial compensation can be a salient factor in the research-related decision-making process.
pediatric asthma parents)
research participation.
Journal of Asthma 44
(7) 489-96.
157
Schulz et al. (2001) The USA Description of the East Side Village Health Worker Residents of  The major goal of the East Side Village Health Worker Partnership is to address the social
East Side Village Health Partnership. The Partnership is a community-based Detroit's east determinants of health on Detroit's east side, using a lay health advisor intervention approach.
Worker Partnership: participatory research and intervention collaboration side  Data collected from 1996 to 2001 are used here to describe improvements in research methods,
integrating research among academia, public health practitioners, and the practice activities, and community relationships that emerged through this academic-practice-
with action to reduce east side Detroit community. The Partnership is guided community linkage.
health disparities. by a steering committee that is actively involved in all
Public Health Reports aspects of the research, intervention, and dissemination
116 (6) process, made up of representatives of five community-
548-57. based organisations, residents of Detroit's east side, the
local health department, a managed care provider, and
an academic institution.
Schwartz (2003) Parallel Canada Discussion paper of trends in ethical research involving Not applicable  The value of subject anonymity is called into question because it reduces the subjects' control
experience: how art and humans; the importance of collaboration, of involving over themselves. The application of art theory, which has already considered these problems,
art theory can inform research subjects, alongside the researchers in the helps question and explore the ways in which the subject turned object of artistic or scientific
ethics in human construction and implementation of research. This interpretation can maintain some control and dignity.
research. Medical paper explores parallels derived from art and art theory.
Humanities 29 (2)59-64.
Seeley et al. (1992) Uganda Involvement of the study community in research on Community  The majority of community participation in the Programme is at the contract level since the
Community-based HIV/AIDS has presented the MRC/UVRI programme members in nature of the research programme as a 'foreign imposition' with 'foreign goals' has precluded the
HIV/AIDS research- in rural Uganda with a multi-layered challenge. A rural Uganda involvement of the community in much of the policy development and research planning.
whither community typology developed in agricultural research which However, as the Programme becomes more established in the area community influence grows
participation? Unsolved defines different levels of community participation in and signs of community impact on policy and increased research inputs are beginning to be seen.
problems in a research research is described where participation may be at  The authors question whether it is realistic to expect that externally imposed health research,
programme in rural 'contract', 'consultative', 'collaborative' and 'collegiate' particularly on sensitive topics, can ever be truly community participatory research.
Uganda. Social Science level (each level indicating an increasing degree of
& Medicine 34 (10) community participation). The typology is applied to
1089-95. community involvement in the MRC/UVRI
Programme.
*Seymour and Skilbeck UK This paper examines the process of accessing user Relates to the  The paper recommends that models of research be developed for accessing user views that are
(2002) Ethical views about cancer and palliative care from an ethical involvement of congruent with the values and philosophies of supportive and palliative care. This requires
considerations in perspective, drawing by way of example on a study of people with striking a fine balance between the ethical duties of providing care and support, nurturing
researching user views. outcomes associated with Macmillan nursing. A moral cancer in independence and autonomy, and achieving research outcomes that are rigorous while also being
European Journal of theory framework is used to discuss some of the issues research accessible and meaningful to users. It also requires developing an understanding of the social,
Cancer Care, 11, 3, 215- involved in trying to achieve ethically sound practice political and economic context of research enquiry with users.
219. and some essentially political issues that frame the
process of accessing users' views are highlighted.
158
Shea et al. (2005) Canada Discussion of the Cochrane Collaboration's work to Not applicable  Much of the groups work has focused on developing relationships with people with
Consumer-driven health 'enable wide participation' including consumers. The (relates to the musculoskeletal diseases to enhance consumer participation in research. The CMSG has built a
care: building Cochrane Musculoskeletal Group (CMSG) is a review involvement of network of consumer members who guide research priorities, peer review systematic reviews
partnerships in research. group of 50 within the Collaboration that has been people with and also promote and facilitate consumer-appropriate knowledge dissemination.
Health Expectations 8 working to increase consumer participation using musculoskeletal  Consumers were recruited through links with other arthritis organisations. Specific roles were
(4) 352-9. knowledge translation and interactions or partnerships diseases in established for the consumer team and responsibilities of the CMSG staff developed.
between researchers and users to facilitate the use of research)  The continuing development of a diversified team of consumer participants enables the CMSG
relevant research in decision making. to produce and promote access to high quality relevant systematic reviews and summaries of
those reviews to the consumer.
Simpson (2003) Canada Review of legal and regulatory requirements Children's  Decisions about children's participation in health research are largely made on a cost-benefit
Children and research influencing children's participation in research. participation in basis or according to comprehension of the participating child. Ethics committees provide
participation: who health research regulatory requirements and there are well developed guidelines for human experimentation,
makes what decisions. informed consent, mental capacity to consent.
Health Law Review 11  Other issues that influence children's participation in research are parental consent, refusal to
(2) 20-9. participate. Interactions with research personnel is a further controlling factor.
*Smith et al. (2008) UK Review paper of user involvement in nursing, Service users  Information was gained about contextual factors, drivers, concepts, approaches and outcomes of
Service user midwifery and health visiting research involved in service user involvement in nursing, midwifery and health visiting research, as well as
involvement in nursing, nursing developments in other research fields. Synthesis of this information shows that there are
midwifery and health research different purposes and domains for user involvement, either as part of researcher-led or user-led
visiting research: A research, or as part of a partnership approach.
review of evidence and  A number of issues were identified as being important for future research. These include: linking
practice. International different reasons for service user involvement with different outcomes; understanding the
Journal of Nursing relationship between research data and service user involvement, and developing
Studies, 45 298-315. conceptualisations of user involvement that are capable of accommodating complex research
relationships.
 Suggestions for the development of practice include: consideration of diversity, communication,
ethical issues, working relationships, finances, education and training.
 Because research is undertaken for different reasons and in different contexts, it is not possible
to say that involving service users will, or should, always be undertaken in the same way to
achieve the same benefits. At a research project level uniqueness of purpose is a defining
characteristic and strength of service user involvement.
Spoth (2007) This paper summarizes the range of challenges in rural Public school  Findings suggest a future focus on building capacity for practitioner-scientist collaboration and
Opportunities to meet prevention research and describes an evolving staff and other developing a network for more widespread implementation of the partnership model in a manner
challenges in rural community-university partnership model addressing rural informed by lessons learned from partnership-based research to date.
prevention research: them. Examples of findings from over 16 years of community
findings from an partnership-based intervention research projects include stakeholders,
evolving community- those on engagement of rural residents, quality linked with
university partnership implementation of evidence-based interventions, and scientists by
159
model. Journal of Rural long-term community-level outcomes, as well as Land Grant
Health 23 Suppl: 42-54. factors in effectiveness of the partnerships. University
Staniszewska et al. UK An account of involving users in the development of a Researchers and  User involvement had an important impact on the development of the research aims, methods
(2007) User research bid to examine parents' experiences of having users with and on ethical aspects. Through careful collaboration a research bid was produced which was
involvement in the a pre-term baby, examining the barriers, enablers and experience of rooted in users' experiences, whilst also addressing key research questions.
development of a impacts of user involvement. having a pre-  Key enablers for involvement included good working relationships, funding for the lead
research bid: barriers, term baby researchers time. Barriers included lack of financial support for users, the time-consuming nature
enablers and impacts. A mainly collaborative approach to user involvement of involvement and the language of research.
Health Expectations 10 was adopted, although different types of involvement  If user involvement remains an international policy imperative with little if any support at the
(2) 173-83. were evident at different stages of the project. Users' vital stage of bid development, policy-makers, service user organisations, researchers, health
experiences and perspectives provided the focus for the service providers and commissioners will need to recognize the limited nature of involvement
regular meetings which underpinned the writing of the that may result and the impact this would have on the evidence base. Researchers will need to
research bid. The researcher acted as a facilitator in the recognize the resource implications of involvement at this point, and user groups will need to
development of the bid, with input from users and the decide whether to participate when there is the greatest chance of influencing research but little
wider advisory group. or no funding.
*Steel (2005) Actively UK Discusses the meaning of ‘marginalization' and Relates to  There are often complex combinations of interdependent factors bearing on each individual or
involving marginalized ‘vulnerability' in relation to user involvement in health groups situation. Tackling the causes one they are identified may mean re-examining the fundamental
and excluded people in research. classified as beliefs behind our institutions. Involving vulnerable and often marginalized groups is likely to be
research. In: L. Lowes vulnerable a challenge for all, both in side and outside of research.
& I. Hulatt (eds)
Involving Service
Users in Health and
Social Care Research,
pp 18-
29. Routledge, London.
Stevens et al. (2003) UK Discussion of an organisational model designed by one Not applicable  Three innovations are identified. First, how three open consumer conferences have increased
Overcoming the cancer network for involving consumers in research. (relates to the awareness of research among service users. Second, the recruitment of consumers to sit on
challenges to consumer Ways of identifying and recruiting consumers that have involvement of project steering groups and a committee that provides a strategic overview of current research.
involvement in cancer been adopted by one cancer network are discussed. people with Third, the establishment of a Consumer Panel for Research where reimbursed, trained consumers
research. Health cancer in are able to provide a considered consumer perspective in a range of settings.
Expectations 6 (1) 81-8. research)
*Telford et al. (2004). UK Consensus methods were used to develop principles for Participants  Eight principles were developed through an expert workshop and Delphi process, and rated as
What does it mean to successful user involvement in health research. An were drawn both clear and valid. Consensus was reached on at least one clear and valid indicator by which to
involve consumers expert workshop, employing the nominal group from health, measure each principle.
successfully in NHS technique was used to generate potential principles and social care,  Consensus was obtained on eight principles of successful consumer involvement in NHS
research? A consensus indicators. A two-round postal Delphi process was used universities and research. They may help commissioners, researchers and consumers to deepen their
study. Health to obtain consensus on the principles and indicators. consumer understanding of this issue, and can be used to guide good practice.
Expectations 7 (3) 209- organisations
220. (n=96).
160
Thornton (2001) UK Discussion of the belief that provision of good quality Public and  Education of children, health professionals, the public and the media is advocated, enabling
Information and information is the key to (a) successful and satisfying professionals in critical appraisal skills and good quality health information to lead to improved involvement of
involvement. Health involvement of patients in their own decision-making healthcare citizens in health-care decisions of all kinds, both individual and societal. Examples of
Expectations 4 (1) 71-4. and (b) involvement of lay people in the research decisions individual, group and specific group involvement through research projects, debates about
process, in debate and other involvement in wider screening, Citizens' Juries, etc. are used to illustrate benefits to patients and to health provision in
health issues. general.
Thornton (2002) Patient UK Discussion of the patient's perspective in identifying Patients with  A wider conceptual approach suggests the interrelationships that should be built, through
perspectives on the benefits of patient involvement in the research cancer networks of communication, so that efficient, effective, economic and equitable health care may
involvement in cancer process. be provided to all those suffering from cancer. This should lead to an appreciation of work that
research in the UK. still needs to be undertaken to achieve progress.
European Journal of An outline of consumer involvement in research and
Cancer Care 11 (3) 205- initiatives being undertaken in the UK is provided.
9.
Thornton et al. (2003) UK This paper offers 'consumer-led' reflections by steering Researchers, a  Consumers and patients contributed to several stages of the research from inception and design,
Evolving the multiple group members of a patient-centred research study consumers' securing of funding, implementation of the protocol, and interpretation and dissemination of the
roles of 'patients' in involving consumer advocates, patients' associations advisory group, findings.
health-care research: and patients, throughout the whole study, from pre- to patients'  'Patient involvement' research initiatives that include an equally wide variety of 'user'
reflections after post-study phases. The study: 'Shared decision making association and participants as 'health-professional' participants, accountable to a 'Health in Partnership'
involvement in a trial of and risk communication in general practice' 800 patients funded project, require a user-led viewpoint to be presented and disseminated.
shared decision-making. incorporated systematic reviews, psychometric
Health Expectations 6 evaluation of outcome measures, and quantitative,
(3) 189-97. qualitative and health economic analyses of a cluster
randomized trial of professional skill development, all
informed by consumer and patient engagement.
Thurber et al. (1992) USA This article discusses the ethical and legal Relates to  There are situations in which customary guidelines are inappropriate.
Children's participation considerations related to the inclusion of children in the involvement of
in research: their right to research process. children in
consent. Journal of research
Pediatric Nursing 7 (3)
165-70.
Treloar et al. (2007) UK Exploratory, pilot study to investigate motivations and 16  Interviewees generally described their participation in the genetic study using altruistic
Why do they do it? A reflections of participants who had provided endometriosis frameworks of reference. Themes that emerged included unquestioning willingness and consent
pilot study towards epidemiological information, blood samples and access study to participate, little concern about privacy issues, desire for more information from the
understanding to clinical records and data in a large genetic participants researchers about the condition rather than scientific progress, the benefits of research
participant motivation epidemiological study of endometriosis, a common with diverse participation to family communication, and differing ideas about genetic influences on
and experience in a multifactorial disorder affecting women. characteristics endometriosis. Specific features of endometriosis also influenced reflections on research
large genetic participation experience.
epidemiological study of
endometriosis.
161
Community Genetics 10
(2) 61-71.
*Tritter and McCallum UK For 35 years, Arnstein's ladder of citizen participation Relates to the  The authors suggest that Arnstein's model, by solely emphasizing power, limits effective
(2006) The snakes and has been a touchstone for policy makers and involvement of responses to the challenge of involving users in services and undermines the potential of the user
ladders of user practitioners promoting user involvement. This article service users in involvement process. Such an emphasis on power assumes that it has a common basis for users,
involvement. Moving critically assesses Arnstein's writing in relation to user research providers and policymakers and ignores the existence of different relevant forms of knowledge
beyond Arnstein. Health involvement in health drawing on evidence from the and expertise. It also fails to recognise that for some users, participation itself may be a goal.
Policy 76 (2) 156-168. United Kingdom, the Netherlands, Finland, Sweden  The authors propose a new model to replace the static image of a ladder and argue that for user
and Canada. involvement to improve health services it must acknowledge the value of the process and the
diversity of knowledge and experience of both health professionals and lay people.
Trivedi and Wykes UK Analysis of the challenges in joint research projects by Researcher and  The involvement of the user-researcher changed the focus of the study and its design and
(2002) From passive subjecting the process of user involvement to ten service user content. More attention was paid to the intervention itself and the way in which it was
subjects to equal questions which arose in the development of a joint participants in delivered. This process increased the amount of time taken to carry out and write up the project
partners: qualitative research project. the research as well as incurring financial costs for user consultation payments and dissemination.
review of user
involvement in research.
British Journal of
Psychiatry 181: 468-72.
*Turner and Beresford UK Review of user-led and user-controlled research. Relates to user-  User controlled research has made much progress but still faces major barriers and problems.
(2005) User controlled led and user- There has been a much greater focus in research on user involvement in research, although
research: its meanings controlled service users have highlighted its significant limitations. In addition most funding has been
and potential. Final research devoted to support user involvement in research and proportionately very little to take
Report. Involve, forward user controlled research.
Shaping Our Lives and  There is now a significant body of user controlled research, both small and large scale, based on
the Centre for Citizen qualitative and quantitative research methods and it can be seen to constitute a coherent and
Participation, Brunel feasible research approach. While there are many areas of agreement, there are also some issues
University, Eastleigh where significant differences of opinion exist. The report offers a series of recommendations to
take forward user controlled research and understanding of it.
Vasquez et al. (2007) USA Report of a community-based participatory research Community  This community-health department partnership has been able to achieve an innovative and
Addressing food partnership in San Francisco's Bayview Hunters Point members and sustainable public policy solution, the Good Neighbor Program, by working closely with policy
security through public neighbourhood documents the rise of a community academic makers and local businesses to expand community accessibility to healthy food.
policy action in a food security policy in response to youth-involved partnership
community-based research that found poor access to quality food in an
participatory research economically disadvantaged area of the city.
partnership. Health
Promotion Practice 8 (4)
342-9.
162
Vasquez et al. (2006) USA Case study of the evolution, research, and policy Members of  The study provides practical lessons for other urban community-academic partnerships using
Promoting processes and outcomes of a community based West Harlem CBPR to promote healthy public policy. The partnership between was explored using a multi-
environmental health participatory research partnership that has had Environmental method case study approach. The conversion of New York City's bus fleet to clean diesel and the
policy through multilevel impacts on health policy concerning diesel ACTion, Inc. installation by the EPA of permanent air monitors in Harlem and other "hot spots" were among
community based bus emissions and related environmental justice issues. and the the outcomes for which the partnership's research and policy work was given substantial credit.
participatory research: a Columbia
case study from Harlem, University
New York. Journal of
Urban Health 83 (1)101.
Vitiello et al. (2005) USA Parental research knowledge was assessed during a Parents of 101  Of the 95 parents completing the questionnaire, 99% knew of possible placebo assignment and
Research knowledge clinical trial about autism. Parents of children children (age 5- that testing the medication efficacy was the main purpose of the investigators; 96% to 98% knew
among parents of participating in a placebo-controlled trial of risperidone 17 years) with that research involved both risks and potential benefits, identified the study medication, and
children participating in were given a questionnaire at the end of the study autism knew of their right to withdraw at any time; 90% to 95% knew of the medication's main side
a randomized clinical effects; 87% reported having been informed of possible alternatives to research participation;
trial. Journal of the and 72% were aware that treatment was randomly assigned (whereas 27% reported that
American Academy of treatment was chosen based on individual needs to ensure best care).
Child & Adolescent  Overall, parents were highly knowledgeable of the main research components. About one fourth,
Psychiatry 44 (2) 145-9. however, seemed unaware that treatment was randomly determined and not personalized,
suggesting that therapeutic misconception may affect some otherwise well-informed parents.
Wendler et al. (2002) USA Paying children to participate in research Relates to the  Ethical concerns over payment for children's research participation tend to regard all forms of
The ethics of paying for involvement of payment as equally suspect. However, payments to reimburse for out-of-pocket expenses and to
children's participation children in compensate for research time and burdens are ethically justifiable and should be strongly
in research. Journal of research considered in cases where research-related costs are especially high and there is little or no
Pediatrics 141 (2) 166- potential for medical benefit.
71.  Although banning all incentive payments beyond reimbursement and compensation is ethically
defensible, doing so runs the risk of impeding socially valuable paediatric research. To avoid this
cost, small incentive payments may be acceptable when needed to ensure sufficient enrolment in
important research.
*Wickham and Collins Europe Recent EU social science research programmes have Relates to user  User involvement within projects has significant national variations. This new user involvement
(2006) Involving users stressed the importance of the ‘user'. Using a study of involvement in could be taken as exemplifying a shift from ‘Mode 1' to ‘Mode 2' knowledge production, but
in social science EU funded social science projects, the article develops social science this would be exaggerated. Users remain distinct from researchers, the pressure for involvement
research – A new a typology of the different forms of user involvement. research came from the European Commission and not the users.
European Paradigm?  User involvement can best be understood as an attempt to strengthen the relationship between
European Journal of academic research and civil society through networks rather than through market relations a
Education, 41 (2) 269. move that is now being rolled back by new developments in EU research policy.
163
Appendices
Appendix 3: Study Data Log
This appendix provides details of the empirical data collected in the four years from
2004-2007.
Information in the tables is referenced in the main body of the thesis using date
referencing.
The categories of data are coded as follows:
Code Category
CON Conference/event
SEM Seminar
WKS Workshop
DIS Discussion
INT Interview
TRN Training/course
OSE Other Significant Event
378
Appendix 3: Data Study Log
Date Ref Trigger event Emergent thoughts/issues Physical data
2004
01.03.04 DIS Start of funded period of multi- - There are many national consumer and voluntary organisations. Email correspondence
method review. Begin ground work - Difficulties of representation can be experience in recruiting through consumer groups and voluntary health Recruitment framework
for recruiting service user reference organisations. Issues can be overcome by having a clear idea about which views individuals are being asked to Minutes of service
group represent. user reference group
meeting
- Some organisations make judgements about which research to become involved with based on time, topic and the
stage in the research that they are approached.
01.04.04 DIS Multi-method review team - Different researchers hold different views on what user involvement in research is. Individual members suggest Paper for discussion
meeting to discuss method and that research quality and access to research processes are important issues. Minutes of meeting
approach
01.09.04 DIS Multi-method review team - The literature and examples from ongoing studies can be used to build different interpretations of user involvement Full report of multi-
(to Mar meeting to discuss first draft of the in health research – there is little evidence to link different outcomes to different approaches method review
05) final report
02.03.04 TRN Evidence-based decision making - Focus of systematic reviews is on developing structured questions – complex questions are difficult to research Course notes
course
02.05.04 DIS Multi-method review team meeting - A service user reference group was perceived and recruited according to the purpose of the multi-method review. Recruitment
to discuss recruitment and first It was not a self forming or self governing group. framework
meeting of service user - A representation framework supported recruitment.
reference group
03.03.04 CON “Qualitative health research”, - Issues about combining types of qualitative research data, meta-analysis and triangulation of types of data. Conference notes
Bristol University - Issue of generalisability versus transferability of findings.
03.03.04 DIS Multi-method review team meeting - Ethical issues for involving service users as partners in a review study differ to traditional ethical principles for Correspondence with
and discussion of ethical involving participants in research ethics committee
issues surrounding recruitment of the
service user reference group
04.09.04 TRN Understanding the modernised - Patient involvement is one priority of modernization agenda in the NHS Course notes &
NHS course, King's College reading
London
05.02.04 CON National Patient Safety conference, - Dr Simon Kelly presentation on patient safety in ophthalmology Conference report
London - Patient safety is a increasing interest in the NHS and abstracts
05.06.04 DIS First meeting with service user - Service users express different views about user involvement, opinions about approaches and impact Service user reference
reference group. Team meet with group meeting minutes
group and discuss expectations,
purpose and objectives. Discuss terms
of reference and ground
rules. Discussions focused on what
makes user involvement
379
successful and what are the important
issues
12.06.04 DIS Multi method review discussion - The topic of user involvement can be thought of in terms of background/contextual factors, approaches, outcomes, Full report of multi-
meeting to develop thematic capacity issues method review
framework
13.02.04 DIS Completion of consultancy project - Little is known about how patients experiences of care can be gained and used to inform development of clinical Final Report to CHI
for Commission for Health care pathways
Improvement (CHI)
13.05.04 DIS Multi-method review team meeting - The team agree a representation framework for recruiting service users to the review based on the activities that Minutes of meeting
nurses, midwives and health visitors undertake, the client groups they work with and the enthusiasm and interests
of individual service users wishing to participate.
13.05.04 SEM “Does the NHS treat patients as - The speakers at this debate were Sir Ian Kennedy, Shadow Chair, Commission for Healthcare Audit and Notes of presentation
citizens?”, St. Thomas' Hospital Inspection, and former Head of the School of Law at King’s, and Lord Sutherland, President of the Royal Society
of Edinburgh and former Principal of King’s. Professor Sir Graeme Catto, Vice-Principal of King’s chaired.
- There is increasing interest on patient and public role in rationalizing and self responsibility in health care.
15.08.04 WKS Undertaking a workshop, Society of - Researchers working in primary care express concerns about the reasons why service users are being involved NAPC Review article
Academic Primary Care and information about approaches that work involvement
Annual conference
15.10.04 CON ‘Excellence in Research through - This is an example of a small scale public free event organised regionally to link in with the work of a Research Conference
Consumer Involvement'. Talks Network and a Consumer Research Advisory Group. advertisement.
from experts and research
findings on consumer involvement
and focus groups.
23.08.04 CON “Learning from the patient - The meeting surfaced considerable anxiety about the potential consequences of involving service users in service Conference notes
experience”, Southeast London development.
Strategic Health Authority, Imperial - Several researchers employed within the NHS articulated a belief that policies for public involvement were devised
War Museum and enforced ‘top-down’. Individuals appeared to be generally sceptical about policy implementation in health
service organisations. Although the political rhetoric is that public involvement is a good thing some people clearly
think that the policy is to the detriment of quality research and health services.
- There was a lengthy debate about how public involvement could be enforced. Some individuals thought that until
commissioners state that patient and public involvement must be part of all aspects of health service development
there will be no impact. A consensus point was that more support was required in the form of professional training
for public involvement.
- Several participants in the discussion expressed concerns about tokenism in relation to their own practice. This
was described as functioning in at least two ways: the expectation that individuals should be responsible for an
entire organisation’s involvement activities; and concerns that commitment to user involvement in research may be
short-lived if political priorities shift.
380
- There is a concern that the rush to involve patients and the public is raising false expectation, eroding professional
confidence and devaluing the impact of individual patient-professional relationships. The debate finished with
consensus that user involvement should not be used to achieve political objectives.
24.6.04 DIS First meeting of service user - The formalities of the research process (particularly gaining informed consent) are not conducive to a sense of Meeting minutes of
reference group. Discuss objectives partnership. service user reference
and intentions for the group
project
25.11.04 DIS Second meeting of service user - Service users identified capacity issues as important – a particular issue was education and training for Meeting minutes of
reference group. Discuss main researchers that was undertaken in partnership with service users service user reference
findings from literature and use group
Review Framework to identify
issues that are important to the
group. Initial discussion about ideas
for dissemination of
findings
2005
01.01.05 OSE Analyse data from exploratory - Individual PPI leads have formed views about the purpose of PPI and this leads to different actions. Interview transcripts
work with PPI leads email correspondence
21.2.05 DIS Dissemination planning meeting - There are different audiences for research findings about user involvement in health research: commissioners, Meeting minutes
(service user reference group research support organisations, research organisations, researchers, service users
Meeting 3) & invited stakeholders
from the NHS, R&D, Department of
Health Commissioning, user groups
and networks to discuss
key messages and dissemination
01.03.05 SEM “The Autonomous Patient Revisited”. - In this seminar issues were raised about the problems of representativeness when involving service users in Notes of presentation
Angela Coulter, University College research and the need for evaluated implementation studies about the different roles of service users in health
London services.
10.3.05 CON RCN research conference, Belfast - Despite service user involvement being on the agenda for this conference there were few service users in Presentation slides
attendance.
18.03.05 DIS A meeting to plan a new research - Discussion meeting organised by INVOLVE to help to plan the development of a network for researchers. The aim Meeting minutes
network for public involvement in of the network is to build knowledge of public involvement in NHS research. The meeting included 12 people with
research at the King's Fund, London experience of user involvement in a broad range of health and social research contexts.
- Much of the discussions focused on the need for evaluation of user involvement in health research to establish the
evidence.
23.3.05 OSE Following a national consultation - The announcement of reduction of Patient’s Forums is positioned as a cost saving measure. Chair of the “Stood up, stood
381
exercise that attracted more than commission, Sharon Grant gives an interview to Society Guardian saying “There are some fantastic people in the down” Society
4,200 responses government civil service but the way in which decisions get made is all very opaque. There is a contrast between the Guardian 23.3.2005.
ministers unveil plans for a network expressed desire to work in partnership and the reality”. SocietyGuardian.co.u
of 572 patient's forums across k/nhsperformance
England to replace Community
Health Councils. The original plan
was for a forum for each NHS trust
and primary care trusts (PCTs),
coordinated by the Commission for
Patient and Public Involvement.
The Commission was abolished in
August 2006 and now there will
only be 300 patient's forums
attached to PCTs and a Centre for
Excellence in patient and public
involvement (The NHS
Centre for Involvement)
01.04.05 OSE End of funded period for multi- - Some members of service user reference group want to continue working on the issues of user involvement – the Contact after the
method review relationships that have been established go on beyond the project deadline project ends, interest
in new projects
27.04.05 CON National SDO conference, - User involvement is the topic of a stream of parallel sessions on the agenda. Conference abstracts
Church House Westminster
11.06.05 CON “Mixed methods in health - The plenary presentations at the conference focused on the integration of qualitative and quantitative sources of Conference abstracts
research”, Cambridge data and whether it is possible to combine data generated in positivist and constructivist research paradigms.
- Professor John Creswell (University of Nebraska-Lincoln, USA) has written extensively about mixed methods
approaches and he presented several models for the combined use of qualitative and quantitative approaches.
One model was the use of qualitative data to inform a randomized controlled trial. It struck me that there were
parallel concepts of service user knowledge being used to inform the research process.
- Dr Saras Henderson (University of Western Australia) spoke about the triangulation of research data and how
multiple references can be used to draw conclusions about what is the truth.
- Professor David Morgan (Portland State University, USA) argued that a paradigm-orientated approach to
combining research data is based on several seriously flawed interpretations of metaphysical concerns about the
nature of truth and reality and the concept of incommensurability. He instead suggested that Pragmatism is the
primary alternative to move beyond simply justifying the utility of using multiple methods to address the broader
issues that interest society – such as the possibilities of and limits of meaningful comparisons between qualitative
and quantitative research.
382
19.09.05 DIS MPhil/PhD transfer viva - It is important to explain where service user’s contributions fit in relation to this study. I am not aiming to create ‘a Notes of the
service user perspective’ of user involvement in research yet I am not excluding service user’s views and discussion (Appendix
perspectives as a form of knowledge. 10)
30.10.05 CON “New Challenges and Innovations in - Chairperson’s Address explains need to develop quality improvement mechanisms that are patient-focused. Conference abstracts
Community Health Nursing”, 3rd Challenges for quality assurance and effective/efficient developments in context of shifting nursing roles and
International Conference on increased care in the community to those with longer term- more complex needs.
Community Health Nursing - Key note speaker talks about different definitions of what nursing care should constitute.
Research, Tokyo
10.10.05 INT Interview in Australia with a senior - Research has multiple purposes for those who are engaged in it there are different priorities which may or may not Interview transcript
lecturer (Participant 1) relate to organisational and professional priorities for research. Research profile and capacity to undertake and field notes
research are important aspects of credibility and ability to gain research funding.
11.10.05 INT Interview in Australia with a senior - Research with pregnant women who have mental health problems can be difficult to gain ethical approval for. Interview transcript
lecturer (Participant 2) and field notes
12.10.05 INT Interview in Australia with - Little is known about cultural aspects of delivering palliative care to minority ethnic groups. For example, where Interview transcript
postgraduate student (Participant 3) people access palliative care or the type of treatment they want or what they expect from the health care and field notes
professionals.
13.10.05 INT Interview in Australia with a senior - Different approaches to decision making affect patient’s views about treatment decisions in palliative care. Interview transcript
researcher (Participant 4) Decision making in research is therefore also likely to be influenced by how decisions are framed by professionals. and field notes
17.10.05 INT Interview in Australia with a senior - Research cultures and structures can prevent researchers from undertaking research with patients because Interview transcript
academic (Participant 5) society states that research is not therapeutic it is a burden. and field notes
18.10.05 INT Interview in Australia with a policy - Academic research is one type of user involvement. Service user organisations undertake different types of Interview transcript
lead of a carers' organisation research for their audiences and benefits. and field notes
(Participant 6) - Carer involvement and carer-led research is different from user-led research because the views and needs of
carers are different to those of the people they care for.
- There is a growing interest in carer issues across Australia and other Westernized cultures because of an ageing
society and the need to fulfil care needs.
18.10.05 OSE Reflections on how the interviews are - Data collection has changed from a situation where I was exploring broad ideas and concepts during the Field notes
progressing interviews to a situation where I am seeking to reconfirm ideas from different perspectives and to draw links
between different pieces of information.
- The reflective notes I am making are helping to identify issues or concepts that I have overlooked earlier on in the
study. For example, stakeholding was not a concept that I pursued with intent in my analyses of the literature yet it
has appeared in three reflective notes made on three separate occasions.
19.10.05 DIS Discussion group (1) with researchers - Participants debated the difference between policies in the UK and in Australia for user involvement. The Field notes
in Australia difference between the concepts of ‘patient’, ‘service user’ and ‘stakeholder’ were thought to be important.
Ownership of research agendas and who contributes to the research process were raised as important issues.
19.10.05 INT Interview in Australia with a - Community engagement is a key concern in rural nursing, particularly because indigenous populations have Interview transcript
383
senior academic (Participant 7) traditionally been overlooked in health service planning and care delivery. Engaging with local community member and field notes
is a key issue for health promotion and improving service access.
- The participant challenges me to explain how I am framing the subject with the approach I am taking. “What
method are you using?” She suggests that a feminist epistemology might fit. It is necessary for me to explore not
only the topic but the assumptions I am making about it. What values am I applying to the topic.
- Each interview I conduct is helping to build my understanding of what user involvement in health research is and
how we might research it. The interviews are exploratory and each one adds a different piece of information to the
study.
20.10.05 INT Interview in Australia with a senior - In this interview the participant talks about the skills of qualitative researchers and the participant begins to reflect Interview transcript
researcher (Participant 8) on the experience of being interviewed during the interview. She suggests that she is experiencing the interview as and field notes
a way of reflecting on her own research skills. The power associated with the interviewer-interviewee relationship.
21.10.05 DIS Discussion group (2) with researchers - Participants described the challenges of deciding who stakeholders are and experiences of engaging with Field notes
in Australia community members, commerce or industry, private health care providers and charitable organisations. Not all of
the participants in the discussion felt that patients or community representatives should always be involved in
decisions about health services or research. Both groups agreed there was a need for research policy at a national
level across Australia to provide guidance about involving different stakeholders in different types of research.
- Following the discussion there were three questions from the audience about: paying service users for their
involvement, the contribution of service users at different stages of the research process, how relationships have
been sustained.
21.10.05 DIS Email from a supervisor about an - I am stretching my thinking about the meaning of research whilst undertaking the research. The method is Email
interview with a senior nurse developing alongside the research study I am undertaking. It is a two-way process. The topic of the study
academic in Australia (19.10.05) challenges me to reflect on how research is undertaken, including how I undertake research. The method and the
methodologies that are being used and who/what is leading the agenda.
- Being clear about the process of research means explaining the approach and the methods, not only the
technique of the research.
22.10.05 CON XIII Cochrane Colloquium, 22- - The group discussion focused on challenges from idea to publication of Cochrane reviews. Issues were raised Conference programme
26th October, Corroboree: about the development of review questions, training people in less developed countries in Cochrane methods, and abstracts, field
Melbourne harnessing different types of knowledge and skills, involving qualitative researchers on review teams, stakeholder notes
groups on methods and knowledge based groups,
23.10.05 INT Interview in Australia with a senior - Research systems encourage partnership with local service providers but the reality is that if research is to be Interview transcript
researcher (Participant 9) undertaken with patients researchers are more likely to approach organisations they have worked with previously and field notes
because gaining access takes a huge amount of time.
- At an individual level recruitment is not a straightforward process. It can take several visits to an organisation or a
home and discussions with carers and health professionals before being able to ask a person themselves if they
would like to be involved.
- Research with people receiving palliative care has been hampered by the view that research is a burden on those
384
who participate. However, people who do participate can gain immensely from the experience. We should give
them the choice.
24.10.05 INT Interview in Australia with - Interest in consumer involvement is growing and it is seen as a way of linking practice and research. Interview transcript
research and development manager and field notes
national nursing
institution (Participant 10)
24.10.05 INT Interview in Australia with senior - Co-construction of meaning is a way of approaching user involvement in health research. Interview transcript
academic (Participant 11) - Power is always present in the research process between researcher and researched. It can not be avoided or and field notes
overcome. Any relationship will involve power. Generally, participants and researchers think in different ways.
25.10.05 INT Interview in Australia with senior - Research is not always about taking user knowledge into professional domains. It can be about gaining public Interview transcript
lecturer/ course co-ordinator support for decisions or developments that will affect a community e.g. industry and commerce dispelling myths and field notes
(Participant 12) about hydroelectric power and health risks. But there is a participation agenda here or is it being used to provide
information and gain support for predetermined agenda?
26.10.05 INT Interview in Australia with senior - Trends to involve service users in health service development and research reflect trends in the UK in these areas. Interview transcript
program and policy coordinator Research commissioners have taken on board concerns about research agendas being too professionally lead and field notes
consumer health organisation and there are now requirements for researchers to engage with the concerns of the population groups they are
(Participant 13) studying.
27.10.05 INT Interview in Australia with former - Research priorities in nursing research must take on board user concerns. Nursing research capacity building is Interview transcript
senior academic (Participant 14) important. and field notes
28.10.05 INT Interview in Australia with senior - Research with some client groups faces challenges of gaining ethical approval. There are barriers to working with Interview transcript
lecturer in midwifery (Participant some groups because of social prejudices against people with mental health problems or drug use. Research with and field notes
15) children and people near end of life can also be particularly hard to gain ethical approval for and to justify why
research with these client groups qualifies as nursing research.
- This problems can mean that lecturers advise students not to undertake research with these groups.
28.10.05 INT Interview in Australia with senior - Research priorities in nursing are influenced my medical research. Nurses should be more willing to express their Interview transcript
researcher (Participant 16) ‘knowledge needs’ to inform practice and development of the profession. and field notes
15.12.05 OSE Healthcare Commission launch - This is an example of a national organisation consultation event that seeks ‘engagement’ with the public and Hard copy of
consultation paper ‘Engaging with patients using a package of approaches rather than just a national consultation event. The document clearly states ‘Engaging with
patients and the public'. that the Commission wants a closer understanding of the public through dialogue. Patients and the
- The consultation paper states that “By ‘engaging’ we mean more than carrying out surveys or consultations. We Public. Have your
want to have real dialogue with patients and the public, and with clinicians, to ensure that we learn from each Say' consultation
other. And we need to act on what we learn, to improve healthcare services”. paper. Copy of
questionnaire
12.12.05 OSE Correspondence with Professor - There is a culture of ‘othering’ in health – provider/user doctor/patient – this has implications for user involvement Letter
Yoland Wadsworth in health research
385
2006
14.05.06 SEM Seminar on user involvement in - User involvement may not ‘fit’ all research contexts – what about research with the nursing workforce. Seminar notes
health research, Kings Fund
23.02.06 OSE Reading Novitz philosophy of - The data theory is essential for explaining the position taken in this study to develop knowledge of user Field notes
interpretation involvement in health research. The validity of the study can thus be judged according to the nature of the data
collected and the type of social practices it relates to. The value of an interpretation can be judged according to the
social utility of the knowledge that is created.
07.03.06 SEM Launch meeting of InvoNET, - There were approximately 50 people in attendance at the meeting. There are many types of people with interests Seminar notes
Royal College of Gynaecologists in this topic area, with a range of professional backgrounds – mental health, social care, community health, clinical
and Obstetricians sciences/lab research, knowledge transfer, commissioning, heads of consumer health organisations (who might
also commission research), social scientists, epidemiologists, Action Researchers, nurse researchers, etc.
- The discussion session raised issues about what the evidence base for user involvement in health research is and
particularly how evidence of impact can be shown.
26.6.06 SEM Launch of the Evidence Network - This centre is an example of how principles of evidence based practice are being played out in the UK social Publicity material/
Website and Associated Services. sciences. A wide range of policy making organisations now have ‘evidence requirements’. In this way evidence is Website
generated through documentary and website analysis, interviews, case studies and seminars, with clients rather www.evidencenetwork
than for clients. .org
- The Evidence Network was launched in 2000 in response to a decision by the Economic and Social Research
Council that social science research needed to be brought much nearer to the decision making process. Initially it
comprised a coordinating centre and eight research Nodes but since the completion of the latter’s research
programmes in early 2005, the Centre has focused on building a much wider international network of researchers,
practitioners and policy makers with interests in Evidence Based Policy and Practice (EBPP). The Centre provides
an information resource for the social science community involved in both research and practice.
- The centre provides training and advice to those working ‘in the evidence informed world’. Staff at the centre carry
out literature searches for associates in support of systematic review compilation, bids for research contracts,
specific requests to identify documents/organisations/people. Clients include Learning and Skills Development
Agency, Parliamentary Office of Science and Technology, Social Care Institute for Excellence, National Centre for
Social Research, House of Commons Science and Technology Committee.
01.07.06 SEM Edvance meeting - The Higher Education Academy Health Sciences and Practice launch Mini-projects 2006-2007. The call for Edvance meeting notes
applications invites proposals to two project strands. Strand one is ‘Involving service users and Carers and other
stakeholders’. It will fund 3 learning and teaching projects related to any health science and practice related The Higher Education
discipline to Run from January 2007 for 12 months. Bids are made available up to £5000. Additional funding is Academy Health
made available for Subject Centre Workshops. These are teams of 3-4 members of university departments within Sciences and Practice
the Health Science and Practice disciplines to develop, plan and implement a new teaching or learning initiative: Newsletter Issue 18
Involving service users and/or Practice Educators is suggested as one of four priority areas. This is an example of (July 2006)
small scale funding for projects related to involvement. The resources provided are small but this ‘pump-priming’
386
funding shows an increased interest in research about user involvement in professional education.
03.07.06 DIS Supervision, discussion of ethics - Discussion about usefulness of a case study on the MATCH project. Looking at how service user/researcher Supervision meeting
application for PhD case study relationships within a study can be achieved and help to bring lay knowledge in to health research. notes
(TG)
21.07.06 DIS Conversation with a Supervisor - The study is exploratory but my views are also being explored. Reflecting on my own views is important but it Supervision meeting
(03.07.06) should not override the main aim of the study. It is important to devise a structured way of reflecting on the issues. notes
03.08.06 DIS Supervision, discussion of - Discussion of ethics application and reasons for rejection. Thinking about structures that create decision making in Supervision record
rejection of ethics application for PhD research. The importance of finding ways to understand and explore research practice. form
case study (FR & TG)
21.08.06 DIS Conversation with a supervisor about - Showing the accuracy and reliability of my observations and analysis is important. Providing examples and links to Supervision meeting
the study data data sources can help to make more explicit the systems I am using to process and draw upon different types of notes
information when making claims.
28.08.06 DIS Transcribing interview data - Reflecting on my role in the study and how the study is reflected in me. The study can not be perfect and I can not Field notes
be objective about it. Reflectivity helps me to see where the study has come from and how my understandings
have changed. It is important to refocus on the context of the study rather than my personal relationship with the
study.
09.09.06 DIS Discussion with supervisor about - The knowledge that I am creating through this study is valid and useful because of the connectivity of the research Supervision record
what a PhD requires (TG) to everyday issues and tensions revealed through the data. I am using my positionality at centre of the research to form
connect with other people, knowledge and perspectives. This connectivity is important because meaning is made
that reflects the understandings of others and the claims I am making are attributable to active processes of
observation, discussion and reflection.
- Attendance at meetings, conferences and discussions are a valuable source of data about user involvement in
research. This information is influencing my thinking about user involvement in health research. These ‘sites of
human interaction’ are the places, beyond the literature, where meaning of user involvement in health research is
being actively constructed.
12.09.06 SEM Beresford/Hanley - Is public participation occurring more than theory suggests? Do public empower themselves by influencing (even Publication (Hanley
in a small way) how health services are developed. 2005)
13.09.06 DIS Discussion with a supervisor about - I am clear that I do not aim to interview a sample of service users in this study. There are theoretical issues of Supervision meeting
service users in the study defining who a group of service users are and on what basis to draw a representative sample. Forming an notes
interpretation is only one small part of forming a wider understanding. This interpretation focuses on how the
object of ‘user involvement in research’ is discursively constructed and used. This is not the same as constructing
an interpretation of participants’ subjective experiences of user involvement in health research.
21.09.06 SEM ‘An informal conversation about - Some researchers at the meeting talked about user involvement as being a philosophical perspective, or a way of Minutes of the
user involvement in health being in the world. meeting
387
research'. A meeting of nine - Some researchers at the meeting talked about user involvement as being a philosophy or a way of being in the
invited researchers to discuss user world. They said that user involvement is ‘a process of realization’, with ‘no going back’, and ‘not being able to do
involvement work arranged to research any other way’.
coincide with a visit by Prof - Participants agreed that there can be no doubt that there is considerable scepticism within the research community
Yoland Wadsworth to the UK. about user involvement. However, examples of professionally trained-consumers ‘at the lab bench’ challenge
preconceptions: ‘I had the condition so I did a PhD about it’.
23.09.06 DIS Conversation with a supervisor about - The study is constrained by the requirements of a postgraduate course. It must be recognisable as a research Field notes
research methods study. Because the study is about knowledge it must engage in a discussion of the nature of knowledge, this is a
philosophical question but it has real implications for user involvement in health research.
- The study methods are themselves based in a particular view of what knowledge is. Using discourse, interpretation
and reflection helps to explore the meaning of knowledge in relation to user involvement in health research.
04.10.06 SEM Presentation on user involvement in - The presentation covered the political agenda for user involvement in service development and research, it looked Field notes
stroke research, at St Thomas' at issues to do with the purpose and outcomes of user involvement in a programme of stroke research.
Hospital, Nina Fudge and Dr Chris - Following the presentation there were four or five questions from the audience, who were all practicing health care
Mckevitt, King's College London professionals. There was a huge amount of scepticism about letting service users anywhere near research. The
main line of criticism was that individuals should not be permitted to influence research or service level decisions
because patients always had an agenda and they were not able to be objective about issues. One person, a
senior medical doctor, asked whether any RCTs had show that user involvement was beneficial to research.
Another person commented that user involvement is not representative, and therefore it could never be fair.
07.10.06 CON INVOLVE conference, ‘People in - Payment for service users becoming involved. Not just and access or recruitment issue. Reward for contribution to Conference report
research' research should be acknowledged.
- It is important to harness enthusiasm of service users and involve people in ways that suit them.
- Concerns about tokenism emerge in different ways – in relation to different aspects of the research process, not
just about who has control over research studies. Tokenism is a concern of some researchers, who feel they do
not have the capacity to involve service users in the ways they would want to.
- There are concerns that service user knowledge should be valued as much as professional knowledge.
15.10.06 DIS Supervision meeting, discussion - Explain the theoretical approach and limitations of the study in relation to the topic of user involvement in health Supervision record
about what knowledge is, the research. What are the philosophical concepts and ideas that I am drawing upon? Make them explicit and explain form
epistemological position being how each helps to build knowledge of the topic.
applied in the study. - The study is using an constructive approach, by drawing on philosophical perspectives of interpretation, discourse
and reflectivity. Adopting such a stance allows me to gain a position from which to explore user involvement in
health research from the perspective of where knowledge lies, how it is being created and the effects it can have.
31.11.06 TRA University of Oxford Continuing - This is an example of a wave of ‘new’ courses set up to help inform professionals about evidence relating to Hard copy of course
Education launch short course on patient outcomes. There is a growing interest in raising awareness of the political context of care and advertisement and
‘Patient Based Evidence'. This course measurement of outcomes. content.
was formerly called Health
388
Status Measurement. The course
aims to develop students become
informed users of health-related
quality of life measures, while
understanding the broader research
and policy context in which such
measurement is
placed.
2007
01.02.07 OSE INVOLVE Evidence, Knowledge - This consultation paper is indicative of a concern to promote patient and public involvement in research by showing Hard copy of paper
and Learning sub-group launch evidence of impact. circulated through
consultation paper on ‘The impact INVOLVE email
of public involvement on network.
research'. This paper opens with
the statement “What difference
does public involvement in
research make? This is the
question that faces all of us who
are engaged in promoting and
encouraging public involvement
in NHS, public health and social
care research. The paper says “we
need to develop and
evidence/knowledge base to:
demonstrate the benefits and value
of public involvement in research,
understand the best approaches to
public
involvement in research, reflect and
learn from the evidence”.
12.02.07 DIS Edvance meeting - Recognition and reward in education of health care professionals. Edvance meeting minutes
- Less emphasis on empowerment of service users through education, more emphasis on training professionals to
understand and communicate with service users.
- Power in knowledge creation.
27.02.07 DIS Discussion with a colleague about - Reflective Interpretation is useful for identifying challenges and outcomes associated with the study and the topic. Field notes
reflective methodology The research is critical because it aims to advance knowledge in this field.
389
13.03.07 DIS Supervision meeting (TG & FR) - Discussion of use of reflexivity, use of personal feelings within the study – drivers of lines of enquiry. Personal Supervision record
relationship with the topic area, explain context of why particular issues are of interest. form
- Reflection can encourage rigour by explaining lines of enquiry that are being followed and methods that are being
used.
10.04.07 DIS Discussion with a colleague about - My work to building knowledge of a particular set of ideas and practices - user involvement in health research – Field notes
the topic of the research does not mean that I must defend or attack such practices. However, the assumptions that I bring to the study may
have similar if less explicit effects.
14.04.07 DIS Conversation with colleague at - On about six occasions following the multi-method review we have been approached by researchers who have Field notes
King's College London about asked for individual names of members of the service user reference group for them to approach. There are issues
‘shortcuts' of data protection that need to be fulfilled but there are also questions about who researchers want to involve and
why.
- Payment issues consistently arise at early meetings – service users express concerns about payments to them for
participation in research taking money from the NHS resources. Some older people/pensioners feel that they do not
need to receive payment for their involvement because they are not suffering loss of earnings by being involved.
- A representation issue in relation to the involvement of Black and ethnic minority groups is that individuals will
sometimes be approached because they are classified as belonging to a minority group yet this will appear
inequitable at the individual level. There is an ethical issue of telling a person they have not been selected because
they do not belong to a minority group even though they fulfil all of the selection criteria. Agendas for involvement
and inclusion can be inconsistent at a practical level. Trying to take shortcuts and meet both agendas can backfire.
09.05.07 CON Conference on Service Delivery - One of the key note presentations was made by a clinical scientist who explained their views about what is Conference papers
and Organisation, Church House. important in health research. Health researchers have very different views about what being a health researcher
Delivering Better Health Services means. My own views on the meaning of being a researcher could help me to appreciate the meaning of research
practices to other researchers. However research practices are not consistent across all research and individual
researchers align themselves more with particular research methods and practices than with others. There are big
differences between what it means to be a clinical health researcher and an applied/health service researcher.
19.06.07 DIS Supervision meeting, discussion of - In practice how user involvement in health research is played out is largely defined by researchers at the research Supervision meeting
user involvement design stage. Some will chose to work with service users because it helps them to attain funding. notes
- New understandings of user involvement in health research need to be ‘packaged’ into simple messages for them to
be taken up in practice. Conveying the implications of new understandings about user involvement is not
straightforward.
- From a Foucauldian view I have all the power I need to change practice through my own conduct. Yet
simultaneously it deflates my aspirations by suggesting that this study, and indeed the total sum of my research
career ahead of me, can at most play a small part in witnessing the appearance and disappearance of discourse.
19.04.07 CON Presentation on user - It is challenging to present ‘user involvement in health research’ to an international audience, where policy context Conference
involvement in Hong Kong, and research practices are different. The topic is elusive, confusing, there are no agreed outcomes or meanings. It proceedings
Evidence-based Practice in is also difficult to explain the relevance to people’s lives. However, the issues and tensions surrounding user
390
Nursing, paradigms and involvement have not disappeared they have strengthened over the course of the study. This reassures me that I
dialogue am pursuing a worthwhile topic of enquiry.
22.06.07 SEM Postgraduate research - One of the presentations is about a study looking at compliance to health promotion advice in alcohol misuse. It Field notes
symposium strikes me that the questions and outcomes of research provide leverage for policy and practice development. The
health professions are built on, and gain power because of their ability to define what evidence is and where it
needs to be built. The professions say who is in and who is not in the profession – who has a right to create the
evidence, to create the policies and the practices that shape society. Health promotion research and practice is an
example of professionals creating a role for themselves in legitimizing techniques of control and compliance models.
- The concepts of risk, safety, personal responsibility and self efficacy all serve to reinforce a social compliance
model. Tools and scales for screening individual’s readiness to change are another professional tool for controlling
individual behaviour. They suggest a way of behaving and provide a knowledge/power framework for professionals
to draw upon. Knowledge becomes a tool for controlling behaviour.
- Research develops along particular lines of enquiry guided by current thinking about professional practice.
Research generates an course for knowledge development, sometimes explicitly through programmes but
sometimes subtlety through lines of thinking.
12.08.07 DIS Supervision, discussion of use of - The literature forms one part of the study data. Policy documents and research papers can be used to inform the Supervision record
the literature in the study analysis of what user involvement is, these influence how user involvement is thought of and implemented in form
research practice.
- Use of the literature should be structured in some way – perhaps around key issues- explore the issues of defining
the topic area.
01.09.07 DIS Discussion with a colleague about - Who participated and who did not participate in this study is an interesting question in itself. Who did I chose to Field notes
participants in the study engage with? Those who are signed up to user involvement in health research or those that are not?
- There are advantages to working alongside researchers who may not perceive this agenda to relate to them
because it allows me to see the other side of the picture, the researchers who think user involvement is not useful or
not relevant.
12.09.07 DIS Supervision, discussion of the - Discussion of use of phenomenology in early stages of the study. Why was this perspective useful? I am now using Supervision record
method I am using (TG and FR) ethnographic methods to build understanding of user involvement in health research. How does my position in the form
research play out in the study?
- The method I am using positions participants in different ways in the study – their experiences are used to build
knowledge, but I can also observe participants and draw conclusions about user involvement in health research.
- It is difficult to define when and where the data are being collected from. The rationale for using ethnographic
methods is that it allows me to explore situated and connected decisions about user involvement in health research
as they are being made by participants. Observational methods help to show what individuals are thinking, saying
and doing but also where there are points of tension and debate amongst different groups of researchers and
service users.
- The notion of discourse is useful because it can be used to look at the types of trends that have preceded policy
391
development.
01.10.07 DIS Supervision, discussion of influence - My reflexive approach has included the influence of my supervisor’s actions and expressed opinions on the study. Supervision record
of the supervisory relationship - The role and style of supervision has affected what has been possible in the study. Boundary setting is important in any form
research study.
03.10.07 EML Email from INVOLVE - INVOLVE are a strong force in leading the agenda for user involvement in research. INVOLVE provide a key role in Hard copy of email
announcing workshop for coordinating and stimulating conversations about user involvement in research. The agenda for topics of
researchers in Jan 2008 to help discussions is generally set by professional researchers who have an interest in the topic area.
identify how INVOLVE and other
organisations can further support
researchers to involve
the public in research.
22.10.07 OSE Preparing for a presentation about - My personal characteristics and circumstances have affected the study. Research has shown that in an interview
aspects of the research undertaken context gender, age and ethnic background can affect data collection. It is difficult to know whether my personal
in Australia characteristics might have hindered my access to other forms of empirical data – what I was able to observe and
situations I could gain access to. In terms of my personal circumstances I was able to travel around the UK, to
Japan, Australia and China during the time span of the study, which certainly provided stimulus for my thinking.
- These journeys might not have been possible if I had caring responsibilities, a physical disability or if English was
not my first language.
30.10.07 DIS Discussion with a colleague about - Knowledge of user involvement in health research will always be constrained by what information is available to us Field notes
epistemology and what we can access.
- Research methods help to show what is omitted or missing from the data employed to make a claim to knowledge.
At a much more fundamental level any knowledge of user involvement in health research is constrained by what we
think we know about the topic – it has a bearing on how we regulate and control that topic.
31.10.07 CON Researching Complex - Growth of research on complexity of interventions and complexity of healthcare settings. User involvement is priority Conference brochure
Interventions in healthcare, Health in research, service development and part of ‘modernisation’ of the NHS. User involvement can be considered a
Services Research complex intervention in that ‘active interventions’ are complex and difficult to define.
Network, King's College London
01.11.07 DIS Supervision, discussion about - The political context of the study contextualizes the implications of the research for research practice and for Supervision record
implications of the study research about National Health Services. form
- Potential audiences for the research could include research commissioners and researchers working across health
research.
10.11.07 OSE INVOLVE invite tenders for two - There are an increasing number of activities that can be identified as being user involvement in social care Hard copies of
reviews on ‘Examples of public research. consultancy briefs
involvement in social care research' - There is a growing interest at a national level in defining what user-controlled research is and what the outcomes
‘Examples of user- can be.
controlled research'
392
22.11.07 OSE NHS Connecting for Health - The objective of this programme's enabling phase is to develop and establish a full programme of work that will Website:
launch Research Capability deliver the outcomes and benefits heralded by the Chancellor in 2005 and further articulated in Best Research for http://connecting for
Programme. The primary Best Health, by following the recommendations in the UKCRC report and ensuring that pharmaceutical regulatory health.nhs.uk/systems
objective is to enable research to requirements can be met. andservices/research
achieve its full potential as a
'core' activity for healthcare,
alongside other uses of NHS data
that lead to improvements
in the quality and safety of care.
4.12.07 CON “Unhealthy professional - Service user involvement is the topic of six presentations and one workshop. Including presentations from service Conference brochure
boundaries?” Working together in user researchers in mental health. Concept analysis in user involvement is similar to Foucauldian archaeology.
health and social care. - Alternative perceptions of user involvement exist. Respect and understanding of alternative perspectives could be
Goodenough College, London the starting point for building better knowledge in this field.
5.12.07 CON “Unhealthy professional - In one presentation a senior nurse academic in learning disability talked about how people with learning disabilities Conference brochure
boundaries?” Working together in have traditionally been excluded from research and even from receiving health services. People with learning
health and social care. disabilities have different and more complex health needs. The benefits for people with learning disability of being
Goodenough College, London the subject of research and being involved in research is not being realized.
393
Appendices
Appendix 4: An introduction to Michel Foucault’s life and works
The birth of Foucault
Paul-Michel Foucault was born to Anne Malapert in Poitiers in France in 1926, his father was a wealthy
surgeon called Paul Foucault. He lived in a conservative area of France and was brought up in the
Catholic faith. In 1939 France fell to the Nazis and Poitiers was used as a medical centre for the rest of
the war. Foucault did well at school and in 1942 he began to study philosophy, contrary to his father's
wishes for him to study medicine. Foucault studied philosophy at university in Paris. He learnt about
great philosophers such as Jean Hyppolite (1907-68) and Friedrich Hegel (1770-1831). His lessons led
him to believe that “History is not a predictable mechanism, but a site of often random struggle in a cruel
world of master-slave relationships”. He was interested in how historically different generations have
reasoned and what the historical effects have been; where the shifting limits of reason have been and the
consequences of going beyond them.
Although Foucault was an inquisitive and intelligent student he was unsociable, argumentative and
suffered with depression. University was a competitive and stressful time, and he had the added pressure
of being discrete about his homosexuality. A series of violent outbreaks and self-harm led to his first
experience of institutional psychiatry in 1948.
In 1950 Foucault joined a Stalinist party but he was critical of the anti-Semitic propaganda the party used
and the Marxist proletarian doctrines it supported. He felt that knowledge was linked to power rather than
to truth. His regular visits to a psychiatric hospital in Paris strengthened his interest in the ‘rational' basis
for research.
In 1955 Foucault moved to Sweden where during the day he lectured in language and literature at the
University of Uppsala and during the night he drank heavily and socialised with friends and entertained
lovers. He moved to Warsaw to run the Centre Français but he could not bare the oppressive climate of
suspicion in post-war Poland. The ambassador advised Foucault to leave following an indiscretion with a
student who had a part-time job with the police. He moved to Hamburg, where he had a fling with a
transvestite. In 1960 Paul Foucault died and Michel used his inheritance to buy an apartment in Paris and
to buy himself time to work on his two theses, on the Enlightenment and the History of Madness. He
became a respected intellectual and got a job offer from the University of Glermont-Ferrand where he
took up a lectureship in psychology.
Explorations of knowledge
As a university student Foucault was interested in two dominant brands of philosophy in France. Jean-
Paul Sartre's work on experience, meaning and consciousness (1905-80) (existentialism) and Martin
Heidegger's (1889-1976) work on how things or objects appear or are present in our consciousness
(phenomenology). Foucault was interested in the history and philosophy of science – he wanted to know
how different theories of knowledge (epistemologies) had defined what is knowable and certain through
history. Philosophers such as Gaston Bachelard (1884-1962) and Alexander Koyre (1892-1964) were
concerned with concept, system and structure rather than lived consciousness. They considered science
and knowledge not as objective or constant truths but more as discontinuous activities of communities
that construct truth. Their work questioned the rationalist and objective claims of science. Foucault saw
scientific knowledge as organised and operationalized. He asked “What is the history of science? What
role does error have in the search for truth?” Foucault used this line of thinking to explore how the human
being had become a subject of scientific inquiry – how the human subject took itself as the object of
possible knowledge. He was not convinced that human experience was the grounds for knowledge on its
own. He felt experience was historically based and influenced by dominant philosophical and scientific
thinking (discourse) of the time.
Foucault's History of Experience was a work that brought together his skills as a historian and a
philosopher. He took a historical view of the philosophy of the human sciences: linguistics, psychology,
sociology; to show that we cannot take experience as a given truth. He argued that the questioning of
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Appendices
scientific method forces us to ask - can we see any knowledge as tenable without knowing the
circumstances and factors within which it is created?
In 1953 Foucault's review of Psychology from 1850-1950 reflected his attempts to resolve psychology's
status as a science with its subject – human existence. Foucault observed that the history of psychology
was inconsistent because it strives to be a scientific discipline yet it acknowledges that human reality is
not naturally objective. The work showed that mental illness was constructed by moral prejudices: It is
not because one is ill that one is alienated, but because one is alienated one is ill. In relation to his thesis
Madness and Civilization (2006, first published 1961), Foucault said his object was “knowledge invested
in complex systems of institutions”. He was interested in authority, practice and opinion rather than
scientific definitions of madness.
Foucault’s Archaeologies
In 1963, Foucault published The Birth of the Clinic: an Archaeology of Medical Perception (1989, orig.
translation 1973). It was a book that drew on clinical medicine produced between 1790-1820. Foucault
did not seek to find a truth for the basis of medicine. He aimed to show how historically medicine had
become linked to sciences, to institutions and to practices. He found the history of medicine to be an
inconsistent combination of rigorous science and uncertain traditions which have changed over time.
Medical discourses organise themselves in relation to different structures – political, social, cultural and
economic, and to each other. Structures affected how things were spoken or seen, and what it was
possible to see and to say at anyone time in history. The book allowed the medical profession to see that
medicine was not simply a mechanical practice but also a language which had evolved over time. He
called the process of uncovering these formations archaeology.
Foucault's method of historical inquiry has had major effects on the study of subjectivity, power,
knowledge, discourse, history, sexuality, madness, the penal system and much more. Foucault argued that
it was important to return in history to a “zero point” when an object of perception emerged in society and
became conceptually isolated from other concepts; such as the time in history when madness was first
defined as something separate to reason. This zero point would mark a social space where an object of
perception was produced by social practices rather than simply being an object of thought. He aimed to
“capture a space, words without a language, the stubborn murmuring of a language which seems to speak
quite by itself”. However, Foucault's approach provoked a fair amount of criticism. Perhaps the most
cutting was from Martin Gay in response to the publication of The Birth of the Clinic (1989, orig.
translation 1973): “Foucault fails to see beyond his own episteme. He is a product of 20th Century French
thought which privileges or challenges ocular society – philosophies of visual perception, looking,
examining, painting etc. He should look at his own premises in promoting the eye as dominant principle.”
The following year at a conference on the philosopher Nietzsche, Foucault discussed history and
interpretation. What interested Foucault was the infinite nature of interpretation: it had been a feature of
the work of Karl Marx, Sigmund Freud and Friedrich Nietzsche. Foucault's interest in language and
interpretation of the world led to his next book, The Order of Things: An Archaeology of the Human
Sciences, published in 1964. He took as his subject the question of how man had become the object of
knowledge (subjectivity) in Western culture. He looked at what constituted science in the Renaissance,
the classical era and the modern era. He unearthed contemporary codes that determined what could or
could not be defined as scientific. The underlying network of ideas that allows thought to organise itself is
an episteme. Each historical period has it own episteme. It limits the totality of experience, knowledge
and truth, and governs each science in one period. A science becomes normal when scientists agree that
their work has identified and solved scientific problems. For example in the Renaissance episteme words
and things were united by their resemblance: convenientia (connected things near to one another),
sympathy (universal attraction), aemuation (similitude within distance) and analogy (similar relations). In
the Classical episteme resemblance was replaced by discrimination. This way of knowing allowed the
classification of stable and separate identities and the possibility of representation. The modern episteme
studies man in himself as historical subject. It is through man that knowledge is possible in the empirical
contents of human life: man's body, his social relations, his norms and values. Language is no longer the
sovereign means to organise or represent knowledge. It is an object of knowledge like others, to be
investigated in the same way as living things, wealth, value and history. The question now is not what
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Appendices
makes words possible but are we capable of mastering them? The philosophical struggle is now to make
new links between language and being. Man in these modern sciences is now seen in his actual existence;
man can analyze his empirical self, and his transcendental self, and knowledge has a physiological
dimension in the brain and faculties of man. If under the classical episteme, man is the central subject of
knowledge was missing, the modern episteme overdid it by forgetting that man is the centre of thought
was simply an epistemic mutation: knowledge in its historical, social and economic form transcends
reference to man himself. In the modern episteme, the human sciences, such as psychology, sociology,
cultural history, create a problem: can man take himself as an object of science? Isn't the idea of man
simply a projection of other sciences like biology? Aren't human sciences too empirical and too
changeable to be thought of as anything other than irregular. These counter-sciences never get close to a
general concept of man, they keep self-criticism of man at maximum power. The last lines of The Order
of Things (1970 trans.) say that “Before the end of the 18th century, man did not exist. As the archaeology
of our thought easily shows, man is an invention of recent date. And one perhaps nearing its end”.
Foucault proclaims the eclipse of man as a ground of thought and suggests that knowledge itself may be
no more than our persistent self-delusion. Foucault argued that “historical man” was built on a system of
knowledge where the human sciences are no science, and science itself possesses no logical stability, no
lasting criteria for truth and validity.
In The Order of Things, Foucault convincingly argued that the influence of rules of knowledge formation
can be seen across different disciplines but these were never formulated in their own right. Foucault
called this agreed upon achievement model a paradigm. However, the problem with Foucault's suggestion
is that it does not account for the way in which one scientific episteme shifted to another, or how they
overlapped. It was never fully solved. He was criticised for making the break between classical and
modern epistemes too stark and overlooking the role of mathematics and ‘hard' sciences in history.
In 1966 Foucault took a post in the University of Tunis in Morocco, where he lived in a converted stable
and slept on a mat. In December that year riots broke out when a student was beaten by the police for
refusing to pay for a bus ticket. It turned into a Six-Day war between Israel and Arab armies. Foucault
sympathised with the students and was drawn into the political argument. He was sent back to France by
the police. On his return to Paris a band of radical subversives known as ‘The Situationists' were
demanding revolution in everyday life. The demonstrations and violence peaked on the 6 th May and
barricades were set up throughout Paris. Foucault lectured to architects about the history of spatiality,
including heterotopias – “other spaces” – such as privileged spaces for individuals or rites of passage.
Foucault later made the point that “Space is fundamental in any exercise of power”. He moved after a few
weeks to the University of Vincennes. The riots followed and Foucault was arrested when students were
prevented by the police from watching films about May 1968.
In 1969 Foucault published, The Archaeology of Knowledge (first translated to English in 1972). It is a
methodological inquiry into knowledge, history and discourse; it is also a self-criticism. This new book
showed that knowledge was an area between opinion and scientific knowledge, and it was embedded not
only in theoretical texts or experimental instruments but in a whole body of practices and institutions. He
looked at the longer-term stable periods beneath historical events and personalities. The purpose of
Archaeology is to excavate the impersonal structures of knowledge recorded in the document of history.
For this reason Foucault was often perceived to be a structuralist but he rejected structuralism for being
too monolithic, too static and inflexible to transformations in meaning. His approach depersonalized
history and showed how it was formed of complex relations and rules – discursive formations. Foucault
dropped epistemes as the dominant principle in history and asserted discourse. To Foucault, discourses
are not linguistic systems or just texts – they are practices which can have institutional, philosophical and
scientific components. Foucault's Archaeology treats discourses, such as medicine, as practices that form
the objects of which they speak. The formation of discourse requires three things: Surfaces of
emergence: social and cultural areas through which discourse appears, e.g. the family, work group or
religious community; Authorities of delimitation: institutions with knowledge and authority, like the law
or the medical profession; and, Grids of specification: a system by which different kinds of a subject can
be related to each other in discourse.
396
Appendices
Genealogy
Foucault famously called discourse a ‘will to truth'. What he meant by this is that discourse has the
power to exclude, prohibit, divide, discipline and reject. “In every society, the production of discourse is
at once controlled, selected, organised and redistributed according to a certain number of procedures
whose role is to avert its powers and its dangers”. Foucault showed that any institution constructs
statements – single units which constitute a discursive formation – strategies, contracts, registrations etc.
By analyzing statements we can see their constraints and where they situate different people. For
example, a person is inserted into a discursive formation out of obligation when they become a patient in
medical discourse. Genealogy describes Foucault's attempt to reveal discourse at the moment it appears
in history as a system of constraint. Genealogy compels Foucault to analyze the influence of discourses
claiming to be scientific – psychiatry, sociology, medicine – on practices as they first appear, such as the
penal system. Genealogy strives to dissipate established identities, revealing them to be intersecting
systems which dominate one another and not some single idea struggling for realization. It aims to reveal
all the discontinuities that transverse us.
Foucault now felt that all identities were a mask. In a 1969 lecture he problematized the meaning of
authorship – a function he claimed, which resolved or hid many contradictions. He said “We must
dispense with our habit of looking for an author’s authority and show instead how the power of discourse
constrains both author and his utterances”. The author's name is not so much about defining his identity,
but is part of a discourse of the author function – involving appropriation, ownership and a corresponding
will to authenticate with the author's motives.
In 1973 Foucault's research project on Pierre Riviére consolidated his attempts to see crime as discourse.
The unknown 19th century murderer had slit the throats of his mother, brother and sister. After his arrest
he wrote an explanation of the crime for the judge and doctors. The act of killing and the act of writing
were interwoven like elements of the same nature – it was uncertain whether he was insane – but his lucid
accounts trapped him in a penal discourse which found him guilty and led to his suicide in 1840.
Discipline and Punish – The Birth of the Prison, published in 1975, is a genealogy of the soul and body in
the political, judicial and scientific fields, particularly in relation to punishment and above all to power
over and within the body. Foucault suggested that power relations have an immediate hold upon the body;
they invest it, mark it, train it, torture it, force it to carry out tasks, to perform ceremonies and emit signs.
The more organised or technically thought-out knowledge becomes, the closer we get to a political
technology of the body.
Foucault not only studied institutions like the prison and the clinic, or judicial or medical discourses, but
also strategies of power which bodies themselves adopt in relation to institutions. He called this dense
web of power relations the micro-physics of power. This form of power is not exercised simply as an
obligation of a prohibition on those who “do not have it”. It invests them, is transmitted by them and
through them. It places pressure upon them and they resist the grip it has on them. Foucault said: “Power
would be a poor thing if all it did was oppress.” and, that “No power is exercised without the extraction,
appropriation, distribution or retention of knowledge. At this level, we do not have knowledge on the one
hand and society on the other, or science and state; we have the basic forms of ‘power/knowledge'”. The
individual is the product of power. What is needed is to ‘de-individualize' by means of multiplication and
displacement, diverse combinations.
In 1975 Foucault was invited to the University of Berkeley, California where he lectured on child
sexuality, repression and ‘abnormal' practices. In his personal life he indulged in pleasures beyond
sexuality in the use of opiates and amphetamines. In 1976 Foucault's unfinished work The History of
Sexuality was published. It is an attempt to understand the birth and growth of “sex” and “sexuality” as
historical objects in Western culture. He was particularly interested in confession as a ritual of truth
production. Foucault found that over the last three centuries we have witnessed a discursive explosion of
‘sex talk', which he termed the incitement to discourse. He argued that socially created rules of self-
examination, such as the confessional, ensure that the sexual thoughts and practices must be surfaced and
reflected upon. The discourses that we engage with have a positioning power: as individuals we subjectify
ourselves.
397
Appendices
In April 1978 Foucault made one of several trips to Japan. He spent time studying and living in a Zen
temple. In keeping with his ongoing project of techniques of the self he studied the contrast between
Christian spirituality– which looked into the individual soul– and Zen mysticism– which obliterates
individualism. In a lecture in Tokyo Foucault said that philosophy could become a counter-power if the
philosopher abandoned his prophetic role and began to think about specific struggles rather than universal
ones. In 1978, he practiced what he believed by becoming involved in the Iran crisis but his attempts at
strategic politics were silenced by the wave of executions that followed the coup. Foucault was criticised
for his direct involvement in political unrest and legal cases. However by 1979 Foucault had achieved
cult status in the USA and his visits to various universities were accompanied by a police escort. In 1983,
at a lecture at Berkeley, Foucault said that “man hasn’t yet reached maturity and perhaps never will. But
a critical project remains, which means we must ask what we are and analyze historically the limits
imposed upon us – so that we may transgress them”. Foucault again renounced the quest for truth
favouring instead critical engagement with the present. He claimed that he did not stand as a master of
truth and justice: “Universal truth is a mask of power”.
In 1984 Foucault published the second volume of The History of Sexuality – The Use of Pleasure. The
book looked back into ancient Greek culture to show how philosophers and doctors considered rules of
conduct in sexual activity. Foucault concluded that the ancient Greeks' sexual ethics had inequalities, but
were problematized in thought as a relationship between the exercise of a man's freedom, the forms of his
power and his access to truth. Foucault's third and final book in The History of Sexuality – Care of the
Self, focused on the importance of the married couple, political roles and civic duties in the Hellenic and
Roman world. Foucault said that “One must, throughout one’s entire life, be one’s own project”: the
cultivation of the self. On 2 June 1984, Foucault collapsed at home in France. His health worsened and
he died on 25 June, aged 57. It is not certain that Foucault knew he had AIDS but he never publically
declared it. Foucault refused to allow a fourth volume, Confessions of the Flesh, about desire in the early
centuries of Christianity, to be posthumously published.
Throughout his life and in his work Foucault courted criticism. Clifford Geertz famously called Foucault
“an impossible object – a non-historical historian, an anti-humanistic human scientist and a counter-
structural structurist”. His work was accused of being sweeping and patchy and for using eccentric detail
without historical accuracy. However, Foucault did try to be faithful to each age he studied. He
researched but in a way that told of a less complacent and more open view of history. He identified new
problems, new approaches and new objects for the subject. Despite Foucault's interest in subjectification
he was criticised for not engaging with the intersubjective being, their individual experiences and
histories. Foucault was criticised for creating a powerful vision that in its supremacy leaves the reader
feeling powerless. However, Foucault supplies humanity with a new model for the human sciences it
helps us to see how power/knowledge complexes exist within the apparatus, practices and institutions of
society. The American post-modern philosopher Richard Rorty has said that Foucault's decentred
approach to understanding power means that power loses its meaning. It is perhaps not that power loses
its meaning but that Foucault does not engage with the meaning and experience of power from the
perspective of those who feel they are powerless. Foucault's contempt for object truth has also been seen
as problematic. He undermined his argument against truth when he became adamant that the evidence
was there to support his theses. Foucault's truth can not vouch for its own truth, that is: without some
form of truth Foucault's work is suspect. Foucault may not have had all of the answers but if his aim was
to raise our consciousness to question the established and accepted then it seems very appropriate that he
did not. Foucault's legacy can be observed in post-modern academia – it has taken its place in discourse
– it is socially contingent and historically located. Foucault's work has power but it will date and it will
appear less relevant and appealing because in time it will disperse into new discursive formations.
References
Foucault M. (1994, orig. translation 1970) The Order of Things. An Archaeology of the Human Sciences.
Routledge.
Foucault, M. (1990, orig. translation 1979) The History of Sexuality Volume 1: The Will to Knowledge.
Translated by Hurley R. First published in this translation Allen Lane: London.
Foucault M. (1989, orig. translation 1972) The Archaeology of Knowledge. Routledge: Oxon.
Foucault M. (1982) The subject and power. Critical Inquiry, 8, 4, 777-795.
398
Appendices
Appendix 5: Extract from the Bristol Inquiry Report Final Summary

Report (BRI 2001)
[Section 101 Page 19]
The principles which should inform future policy about involving the
public and patients in the NHS include:
 Patients and the public are entitled to be involved wherever decisions are
taken about care in the NHS.
 The involvement of patients and the public must be embedded in the

structures of the NHS and permeate all aspects of healthcare.
 The public and patients should have access to relevant information.
 Healthcare professionals must be partners in the process of involving the

public.
 There must be honesty about the scope of the public's involvement, since
some decisions cannot be made by the public.
 There must be transparency and openness in the procedures for involving

the public and patients.
 The mechanisms for involvement should be evaluated for their

effectiveness.
 The public and patients should have access to training and funding to
allow them fully to participate.
 The public should be represented by a wide range of individuals and

groups and not by particular ‘patients' groups'.
399
Appendices
Appendix 6: Search terms for the multi-method review
AMED (Allied and Complementary Medicine) 1985 to July 2004

1. (consumer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract,
heading words, title]
2. (user adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract, heading
words, title]
3. (client adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract,
4. (patient adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract,
5. (public adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract,
6. (carer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract, heading
words, title]
133 papers
7. (lay adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=abstract, heading
words, title]
8. Patient satisfaction/ or Consumer satisfaction/ or Patient participation/
9. or/1-8
10. Nursing care/
11. models theoretical/ or research design/
12. (research methodology adj3 nurs$).mp. [mp=abstract, heading words, title]
13. (practice development adj3 nurs$).mp. [mp=abstract, heading words, title]
14. (community development adj3 nurs$).mp. [mp=abstract, heading words, title]
15. nurses/ or nursing staff/
16. or/10-15
17. 9 and 16
British Nursing Index 1985 to July 2004

1. (consumer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title,
abstract, subject headings, drug trade name, original title, device manufacturer, drug manufacturer name]
2. (user adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title,
abstract, subject headings, drug trade name, original title, device manufacturer, drug manufacturer
name]
3. (client adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, abstract,
subject headings, drug trade name, original title, device manufacturer, drug manufacturer name]
4. (patient adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, abstract,
5. (public adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, abstract,
6. (lay adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, abstract,
7. (carer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title,
abstract, subject headings, drug trade name, original title, device manufacturer, drug manufacturer 136 papers
name]
8. CONSUMER SATISFACTION/
9. Patients- Empowerment.sh.
10. "Patients- Attitudes and Perceptions".sh.
11. or/1-10
12. Nursing Research.sh.
13. (Nursing Management or "Management- Education and Training").sh.
14. Research Methods/
15. (research methods adj3 nurs$).mp. [mp=title, abstract, subject headings, drug trade name, original title,
device manufacturer, drug manufacturer name]
16. (practice development adj3 nurs$).mp. [mp=title, abstract, subject headings, drug trade name, original
title, device manufacturer, drug manufacturer name]
17. (community development adj3 nurs$).mp. [mp=title, abstract, subject headings, drug trade name,
original title, device manufacturer, drug manufacturer name]
18. or/12-17
19. 11 and 18
CINAHL (Cumulative Index to Nursing & Allied Health Literature) 1982 to July Week 4 2004
1. (consumer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl
subject headings, abstract, instrumentation]
2. (user adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl
3. (client adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl
4. (patient adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl
400
Appendices
5. (public adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl

6. (lay adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl
subject headings, abstract, instrumentation] 79 papers
7. (carer adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, cinahl
8. Consumer participation/
9. or/1-8
10. Research, Nursing/
11. Clinical Nursing Research/
12. Nurse Researchers/
13. Nursing Administration Research/
14. "Quality of Care Research"/
15. (research methodology adj3 nurs$).mp. [mp=title, cinahl subject headings, abstract, instrumentation]
16. (practice development adj3 nurs$).mp. [mp=title, cinahl subject headings, abstract, instrumentation]
17. (community development adj3 nurs$).mp. [mp=title, cinahl subject headings, abstract,
instrumentation]
18. or/10-17
19. 9 and 18
EMBASE 1980 to 2004 Week 31

abstract, subject headings, drug trade name, original title, device manufacturer, drug manufacturer name]
name]
subject headings, drug trade name, original title, device manufacturer, drug manufacturer name] 111 papers
name]
8. CONSUMER/
9. or/1-8
10. Nursing/
11. (research methodology adj3 nurs$).mp. [mp=title, abstract, subject headings, drug trade name, original
12. (practice development adj3 nurs$).mp. [mp=title, abstract, subject headings, drug trade name, original
13. (community development adj3 nurs$).mp. [mp=title, abstract, subject headings, drug trade name,
original title, device manufacturer, drug manufacturer name]
14. or/10-13
15. 9 and 14
MEDLINE 1966 to July Week 4 2004

original title, abstract, name of substance, mesh subject heading]
2. (user adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, original
title, abstract, name of substance, mesh subject heading]
3. (client adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, original
4. (patient adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, original
5. (public adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, original
6. (lay adj3 (participat$ or involve$ or empower$ or collaborat$ or consult$)).mp. [mp=title, original
1078 papers
7. CONSUMER ADVOCACY/ or CONSUMER PARTICIPATION/
8. Patient Participation/
9. or/1-8
10. NURSING RESEARCH/ or NURSING EDUCATION RESEARCH/ or NURSING
ADMINISTRATION RESEARCH/ or COMMUNITY HEALTH NURSING/ or NURSING
EVALUATION RESEARCH/ or NURSING/ or CLINICAL NURSING RESEARCH/ or NURSING
METHODOLOGY RESEARCH/
11. Patient-Centered Care/
12. (research methodology adj3 nurs$).mp. [mp=title, original title, abstract, name of substance, mesh
subject heading]
401
Appendices
13. (practice development adj3 nurs$).mp. [mp=title, original title, abstract, name of substance, mesh
subject heading]
14. (community development adj3 nurs$).mp. [mp=title, original title, abstract, name of substance, mesh
subject heading]
15. or/10-14
16. 9 and 15
PsychINFO 1985 to July Week 4 2004

abstract, heading word, table of contents, key concepts]
heading word, table of contents, key concepts]
144 papers
8. exp CONSUMER SURVEYS/ or exp CONSUMER RESEARCH/ or exp CONSUMER
SATISFACTION/
9. exp CLIENT PARTICIPATION/ or exp PARTICIPATION/
10. involvement/
11. or/1-10
12. nursing/
13. exp "Quality of Care"/
14. (research method$ adj3 nurs$).mp. [mp=title, abstract, heading word, table of contents, key concepts]
15. (practice development adj3 nurs$).mp. [mp=title, abstract, heading word, table of contents, key
concepts]
16. (community development adj3 nurs$).mp. [mp=title, abstract, heading word, table of contents, key
concepts]
17. or/12-16
18. 11 and 17
ISI Web of Science 1990-2004

DocType=All document types; Language=All languages; Database(s)=SSCI; Timespan=1990-
2004 1,023
#1 TS=(consumer* same (participat* or collabor* or involve* or consult* or empower*))
#2 TS=(user* same (participat* or collabor* or involve* or consult* or empower*)) 1,562
#3 TS=(client* same (participat* or collabor* or involve* or consult* or empower*)) 1,491
#4 TS=(public* same (participat* or collabor* or involve* or consult* or empower*)) 4,122
#5 TS=(patient* same (participat* or collabor* or involve* or consult* or empower*)) 8,536
#6 TS=(lay* same (participat* or collabor* or involve* or consult* or empower*)) 309
#7 TS=(carer* same (participat* or collabor* or involve* or consult* or empower*)) 179
#8 TS=(research* same (nurs* or □idwife* or health visit*) ) 3,718
#9 TS=(community develop* same (nurs* or □idwife* or health visit*) ) 18
#10 TS=(practice develop* same (nurs* or □idwife* or health visit*) ) 33
#11 #1 or #2 or #3 or #4 or #5 or #6 or #7 16,427
#12 #8 or #9 or #10 3,755
#13 #11 and #12 187 papers
Other databases Key Search Terms

AgeInfo Involvement, Participation Research, Consumer
Applied Social Sciences Index and Abstracts for Health Involvement, Research
British Education Index Health, Research, Involvement
Care Data (via Electronic Library for Social Care Involvement, Participation
Cochrane Library Consumer (next) Involvement
ERIC (Educational Research Information Centre) Involvement, Participation
Health Promis (UK health promotion) Involvement, Participation
Internurse.com Involvement, Participation, Consumer
National Electronic Library for Health Involvement
402
Appendices
Appendix 7: Making reflexivity visible
403
Appendices
Appendix 8: Researcher recruitment letter
Nursing Research Unit

King's College London
James Clerk Maxwell Building,
57 Waterloo Road,
27th July 2005 London SE1 8WA
United Kingdom
Tel: +44 02078483201

Fax: +44 2078483069
Dear
Involving service users in healthcare research: a comparison of the UK and Australia

I would like to invite you to participate in a cross-cultural study about user involvement in health
research. I will be undertaking one-to-one interviews with researchers working in nursing, midwifery and
health service research at Monash University in October 2005. I would particularly like to talk to you if you
have experience of involving patients, carers or community members in designing, undertaking or
evaluating research.
In the United Kingdom government policy requires researchers to involve service users in research about
health and social care services. It is thought that these partnerships can make research and outcomes for
health services more appropriate to the needs of service users. This study aims to identify the social, cultural
and political factors that influence user involvement in healthcare research, including the influence of research
traditions and cultures.
Your participation is entirely voluntary but the views of researchers at Monash University will form a valuable
part of the study and will help to inform the development of policies and methods for involving service users in
research in the UK.
The interview will take approximately 20 minutes and will cover:

 Your experiences of undertaking healthcare research in Australia;
 Your views of the challenges and priorities for healthcare research;
 Your opinions about the role of patients and the public in research.
I would like to tape record the discussion to help me recall what is said. This will be confidential and any
comments that are used in the report will be anonymised. Your participation will be acknowledged in the
final report and you will be provided with a summary of the main findings of the interviews.
If you are willing to participate please send an email to me at Elizabeth.m.smith@kcl.ac.uk and I will contact
you to arrange a convenient date and time to meet. If you would like to discuss your participation please
do not hesitate to contact me by email in the UK, or Professor Margaret O'Connor, Associate Supervisor
at Monash University.
Yours sincerely,
Elizabeth Smith
Nightingale School of Nursing and Midwifery, King's College London
Associate Supervisor: Professor Margaret O'Connor, School of Nursing and Midwifery, Monash
University Margaret.OConnor@med.monash.edu.au
Involving Service Users in Research: A comparison of the UK and Australia
PROJECT INFORMATION SHEET FOR RESEARCHERS AT MONASH UNIVERSITY
Interviews at Monash University

Context During October 2005 a researcher from King's College
In the United Kingdom user involvement (patients, London will be undertaking one-to-one interviews with
carers and community members) is a prominent feature researchers working in nursing, midwifery and health
of contemporary health and research policy. The service research. The purpose of this part of the study is to
government requires health and social care identify the social, cultural and political factors that
organisations to involve service users in all aspects of influence user involvement in health research, including the
planning and service development and researchers influence of research traditions and cultures.
must show how they intend to involve service users in
the research process. Interviews will take approximately 20 minutes and will cover:
- Experiences of undertaking healthcare research in
It is thought that partnerships with service users can make Australia;
research and outcomes for health services more - Views of the challenges and priorities for healthcare
appropriate to the needs of patients and local research;
communities. - Opinions about the role of patients and the public in
PhD student: Elizabeth Smith, research.
Nursing Research Unit, King's
College London, UK Aim Interviews will be taped but this will be confidential and
This study aims to identify the factors that support comments will be used anonymously in all reports.
Supervisors: Professor Fiona Ross,
Director of the Nursing Research user involvement in health research in order to
Unit, King's College London & Dr establish ways for professionals and organisations to If you are undertaking research about nursing,
Patricia Grocott, Florence prepare, and to target future development activities
Nightingale School of Nursing and midwifery or health services and would be willing
Midwifery, King's College London and resources. to give your views of the above issues please
Associate Supervisor: Professor email: Elizabeth.m.smith@kcl.ac.uk or register your
Margaret O'Connor, School of interest with Professor Margaret O'Connor.
Nursing and Midwifery, Monash
University
Appendices
Appendix 9: Interview schedule
REF:
Date: / / 2005 Time: : to : Location:

Before we start the discussion it is important that I let you know that:
 What you say is confidential. I will only breach this confidentiality in the unlikely case
that I am concerned about professional misconduct or personal harm.
 Your comments will be used anonymously in any reports or papers that I write. I will
always use a participant reference number instead of your name.
 If you would like to be provided with a summary of the main findings of the
interviews as a whole, please make sure I have your email address.
 If you think of anything else that you would like to tell me after the discussion please
drop me an email or telephone me.
Organisation:
Job/Role:
1) What is your professional background?

Academic/professional qualifications:
2) Can you briefly explain to me the type of research you are interested in or the
topics that you have experience of? (including number of years experience in
Australia)
3) Thinking about your experiences of research, how would you describe the
type of work that you have undertaken or been part of?
4) Have you come up against any challenges or barriers to do with involving

patients or people in the research?
Can you explain what these were, and why they might have happened?
5) Thinking more broadly now about nursing/health service research, what do

you think should be the purpose of research or what should be the priorities for
research?
Can you explain why you think this?

Appendices
6) Do you think patients, carers or the public can contribute to answering these
questions/research priorities?
If so, in what way?
7) Have you been involved in a piece of research that has involved patients
or the public as partners or collaborators, for example, as a co-researcher or in
an advisory role?
Can you give a brief description of the project and how patients/carers were
involved.
8) Do you have any other comments or views that you would like to make?
9) Can you suggest any other people you think I should talk to?
If you think of anything else that you would like to tell me after the discussion
please get in touch. (email address and telephone number supplied)
407
Appendices
Appendix 10: Summary notes of MPhil/PhD upgrade examination
(Notes taken by Professor Fiona Ross, Dr Patricia Grocott)
1. The title should reflect NHS research. The study/research questions relate to NHS policy.
2. The study needs clearer contextualization to explain what it is about - nursing, health
services research? Provide more information about antecedents to user involvement in
different traditions of research.
3. Is it NHS you are focused on or are you interested in academic research?
4. Phase 4 – identifying Trust and PCT – do you mean researchers employed by Trusts. Who
are researchers and who are employers?
5. Fit with Australia and consistency of approaching academic researchers.
6. Where are the users in this project? Should they be talked up a bit?
7. Lots of good ideas, but more scene setting needed to focus the research questions and
acknowledge what is not being looked at. Add in temporal dimension.
8. Distinction between PPI and involvement in service delivery and of user involvement in
research – careful not to extrapolate from PPI views on service development to research.
9. Analysis: explain how are meaningfully bringing together themes into a common
framework
10. Good explanation of stages of analysis but how are you distilling ideas from the data and
how are you checking the process?
11. How do you challenge your interpretation? E.g. establishing causal associations
12. Explain how themes are linked to/emerged from the data.
13. In relation to the method – it would be helpful to have a step by step account of the analysis
– and a sequence of progress through the study.
14. Concept of readiness – interesting one – state or process? My understanding ‘anticipation of
events but if you involve service users how do you accommodate and tolerate uncertainty.
Readiness is suggestive of policy language. Another idea is enablement which may be more
relevant to organisational change. If preparedness is about capability and attitude then this is
more useful than Dalton and Gottleib's limited definition of readiness. Grow the concept of
readiness out of your data – rather than pick a concept off the shelf to fit.
15. You should be able to step outside the study and make recommendations.
16. You are shooting between ideas of constructivism – move towards a stronger position rather
than jumping across ideas.
17. You identify a relationship between user involvement in research and research methods –
what do you mean about these things being related?
18. What balance can be drawn between good information and pressure on individual
respondents? In the next phase it is not unreasonable to ask for interviews – perhaps don't
overplay convenience of emails
19. Justify the framework for data collection – where has this come from? What rationale?
20. When you describe activities whose activities are you talking about- personal,
organisational?
21. Are there any fields of research that you thought you wouldn't include? Policy is to involve
service users in all research – explore the possibility that some areas do and some don't –
and the possibility that users have no interest/purchase on these areas.
22. Identify the link between this area and other modernisation policy. Policy related research
does shift and it would be dull if it didn't. Look at Vari Drenan's PhD with regard to
undertaking research within a shifting policy context.
23. Reflexivity – do you have a view? Grow your own position and describe how far your ideas
have changed. Think about how you structure reflexivity – what are the questions being
asked?
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Appendix 11: Published papers
1. Smith E., Donovan S., Manthorpe G., Brearley S., Sitzia J., Beresford P. Ross F. (In
press) Getting ready for service user involvement in a systematic review. Health
Expectations.
2. Smith E., Ross F., Donovan S., Manthorpe G., Brearley S., Sitzia J., Beresford P.
(2008) Service user involvement in the design and undertaking of nursing, midwifery
and health visiting research. International Journal of Nursing Studies 45, 298-315.
3. Smith E and Ross F. (2006) Service user involvement and integrated care pathways.
International Journal of Health Care Quality Assurance 20 (3) 195-214.
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Getting ready for service user involvement in a systematic review
Smith E., Donovan S., Manthorpe G., Brearley S., Sitzia J., Beresford P. Ross F. (In press) Health
Expectations.
Abstract
Objective: This paper aims to support the critical development of user involvement in systematic
reviews by explaining some of the theoretical, ethical and practical issues entailed in ‘getting ready' for
user involvement. Background: Relatively few health or social care systematic reviews have actively
involved service users. Evidence from other research contexts show that user involvement can have
benefits in terms of improved quality and outcomes, hence there is a need to test out different
approaches in order to realise the benefits of user involvement and gain a greater understanding of any
negative outcomes. Design: Setting up a service user reference group for a review of user involvement
in nursing, midwifery and health visiting research involved conceptualizing user involvement,
developing a representation framework, identifying and targeting service users and creating a sense of
mutuality and reciprocity. Setting and participants: Recruitment was undertaken across England by two
researchers. Members from 24 national consumer organisations were selected to participate in the
review. Main variables studied: Learning was gained about finding ways of navigating consumer
networks and organisations, how best to communicate our goals and intentions and how to manage
selection and ‘rejection' in circumstances where we had stimulated enthusiasm. Results and
conclusions: Involving service users helped us to access information, locate the findings in issues that
are important to service users and to disseminate findings. User involvement is about relationships in
social contexts: decisions made at the early conceptual level of research design impact on users and
researchers in complex and personal ways.
Introduction
In the United Kingdom (UK) government policy and research evidence suggest that the active
involvement of service users (patients, carers and the public) in health and social research is a ‘good
thing'1 2 3. The term ‘user involvement' broadly encompasses different approaches to direct participation
or representation4; either as a one-off occurrence or an ongoing relationship5. Issues associated with
developing and sustaining new types of relationships with service users can vary considerably in
different research contexts and paradigms6, hence there is a need to test different approaches in order to
realise the benefits of user involvement and gain a greater understanding of any negative outcomes.
Although systematic reviews are increasingly being commissioned to inform policy development and
provide recommendations for practice and research, when compared with other research contexts user
involvement appears scarce and highly variable7. Methodological approaches include medical models,
where statistics about effectiveness are amalgamated across several research trials, to qualitative
approaches where information is gathered and synthesized to explore the scope of a topic or build an
interpretation of the issues8 9, including approaches described as meta-analysis, systematic research
synthesis, narrative review and realistic synthesis10; and classified as effectiveness-based, problem-based
or theory based-approaches11. Some approaches align with qualitative research methods, including
grounded theory, hermeneutics, and phenomenology; policy discourse analysis; or historical approaches
to documentary analysis9. The purpose of this paper is not to explore such differences it is to explore
some of the theoretical, practical and ethical issues of involving service users in systematic review. This
paper does not explore issues about user involvement in the commissioning of systematic reviews, in
ethical review processes or in peer review. Nor does it discuss variations in research policy or practice
internationally. Issues about the status of lay knowledge in relation to definitions of what counts as
evidence have been raised by previous authors12 13.
This paper is informed by our experiences of recruiting service users to a reference group for a review of
user involvement in nursing, midwifery and health visiting research. The findings of the review showed
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that ideas and approaches to user involvement are broadly influenced by social and political forces, that
they are shaped by the research contexts they are emergent within and that user involvement can
influence research but this is difficult to plan for or to measure because of attribution and diffusion of
effects. The final report provides details of these findings14. The first part of the paper analyses previous
work in this area and explains issues of definition, conceptualization and representation. We then
describe the approach we took for involving users in the review and explain how this meant navigating
consumer networks and organisations, learning how best to communicate our goals and intentions and
how to manage selection and ‘rejection' in circumstances where we had stimulated enthusiasm. We
illustrate the issues using reflective notes written by members of the project team and service users at the
time of the review. The discussion draws this learning together to suggest what the implications might be
for future systematic reviews.
Previous work to involve service users in reviews
The value of lay perspectives has been long recognised in systematic review and more so since the rise of
health service research15 16. A review of social science research shows that involving service users and
carers in systematic reviews can help to define scope7 and the questions being posed. Service users can
also support the retrieval and analysis of sources of data17, contribute to the formulation of
recommendations or inform guidelines18 and enable dissemination beyond academic communities. User
involvement can also enable a greater level of understanding through appreciating how people experience
and talk about a topic19 20. Staniszewska and colleagues17 provide an account of involving service users in
writing a research bid for a review project and explain how this improved the relevance of the proposal.
Our experiences of involving service users show further benefits in terms of accessing unpublished
information and locating findings and recommendations in issues that are important to service users 14.
Service users helped us to formulate key messages for a range of target audiences (including policy
makers and the research community) and to disseminate findings through developing a ‘lay' executive
summary and web-based project newsletters. In this paper we also explain that the process of recruiting
service users helped us to reflect on the purpose of the review and to find ways to connect an academic
project with language and issues that were recognisable to those that the research was about.
In health research user involvement has been classified according to the roles or activities service users
can take up14 either to represent personal views (direct) or represent the views of others (indirect) 5.
Current conceptualizations suggest involvement has hierarchical levels of control from consultation,
through to collaboration and user-control21 22. In the context of systematic review including lay
perspectives and views as a form of data correspond with the level of consultation. In some reviews
undertaken by the Cochrane Collaboration may involvement may be classified as collaboration as service
users work with researchers to define topics and ways of undertaking reviews or reviewing what has been
done23. In the area of clinical guidelines development the National Institute of Clinical Excellence
regularly seeks and includes public views about topics as part of the systematic reviews it undertakes and
members of the public can comment on draft guidance (an example of how this can happen through
specific studies is provided below). Similarly, researchers applying for National Institute for Health
Research funding are encouraged to involve patients and the public and since 1997 the Health
Technology Assessment programme (www.hta.ac.uk/consumers) has actively promoted public
involvement in all its key stages24.
The Social Care Institute for Excellence aims to build on previous learning by creating a database of
examples of service user and carer participation in systematic reviews in social sciences 25. One such
example is a Department of Health commissioned systematic review of what patients thought about
electroconvulsive therapy, undertaken by Service User Research Enterprise (SURE). The review aimed to
include user perspectives on ECT as compared with clinically rated outcomes to inform the development
of national guidelines26. Two of the researchers leading the project had received ECT themselves. Users
involved in the review emphasised the importance of providing information on consent and information
about the nature of the treatment18. Another example, funded by the Department of Health and conducted
at the Evidence in Policy and Practice Information and Coordination (EPPI) Centre, concerned HIV
prevention in men who have sex with men. This review involved service user organisations as advisory
group members who helped to prioritise topics for the review. A key recommendation from this project
was the need for a dedicated budget and staff to maximise the potential contribution from advisory group
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members, as well as the need for research about user involvement in this context 19. A third example is a
review that was part of a programme of work to develop evidence-based policy in the National Newborn
Screening Programme. In this particular review user involvement focused on interpretation and
implementation of the findings to form guidance. The project team reported that user involvement
influenced the detail and wording of public information leaflets and also enabled the users to become
involved in subsequent work to develop guidelines and new research27.
Potential barriers
A number of barriers may inhibit or prohibit reviewers from involving service users more actively. For
example developments in other research contexts indicate that the terminology can be problematic. The
term ‘user' has been applied indiscriminately in policy and research publications to mean those who may
use research, those whom research is about, and those it might affect, as well as having additional
meanings in the context of health and service use. A review of social science research funded by the
European Union found that of 276 projects only 88 explicitly defined who the users were28. A key
question is therefore how researchers define users in relation to particular studies and how they perceive
and construct opportunities for involvement. The term ‘involvement' is also problematic as it suggests a
situation where members of the public are brought into professional arenas. Although this may be an
accurate reflection of how the majority of opportunities for involvement are perceived and constructed,
support for user-controlled studies is growing5. Indeed, some consumer-led voluntary sector groups
commission health research, provide training and are involved in the review of research institutions.
Current conceptualizations have been criticised for the tendency to present user involvement as static and
premeditated, underplaying its often dynamic and emergent qualities; and for overlooking potential
blurring with traditional researcher roles5.
Issues of who is involved in research have been debated in the user involvement literature but
representation remains an area of tension and confusion4. Classifications of service users have been
constructed in terms of the involvement of individual patients, patient groups and patient representatives 4
29 30
. The role of consumer groups and voluntary health organisations has also been recognized in
representing the collective interests of patients, users and carers31. It is important to question on what
grounds particular concepts of representation should be applied to systematic review32. It may also help to
resolve questions about the mandate of service users within review studies 29. These potential barriers are
further explored in the following account of our approach.
OUR APPROACH
We think it is important to reframe user involvement as relationships within social contexts. In this vein,
in the following account we elucidate how our relationship with service users began and what we learned
about some of the barriers and motivations for involvement in the process.
1. Envisaging a role for service users
The systematic review discussed here was tendered in April 2003 to review the evidence and theory about
user involvement in nursing, midwifery and health visiting research. We proposed to work with national
service user and carer advocacy groups and researchers in health care to determine the scope of the
review, identify appropriate sources of information, reflect on the evidence and identify which findings
were important and how they should be disseminated. The final report provides details of the literature
searches and researcher consultations (national survey and in-depth interviews) 14. Our rationale for
developing a service user reference group was that the group would:
- connect the project with specific service user issues and perspectives;
- influence the project by contributing to developing priorities and principles;
- be critical, challenging and stimulating; and,
- advise on the best ways of disseminating findings through different networks.
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At proposal stage we did not have the time, networks or resources to establish such a group of service
users. These factors have previously been identified as barriers to involving service users in developing
proposals17. Time was further limited because we were responding to a tender rather than developing a
proposal for a study. A consumer representative with experience of collaborating on research projects
helped develop the plans and was an applicant for the proposal (SB). We made use of guidelines on user
involvement33 and sought advice from INVOLVE (a Department of Health funded organisation
supporting public involvement in research). We thought that a service user reference group set up
specifically for the review would enable a collaborative and interactive relationship to develop. We
would support the group to develop terms of reference and ways of working, and provide service users
with information and orientation to the issues rather than research training. Our proposal included costs
for 25 service users to meet three times with £100 payment per meeting and reimbursement for travel
expenses and carer costs (estimated at £50 per person).
2. Conceptualizing membership
We developed a representation framework to serve as a guide to recruitment (see Box 1). We chose to
align membership with representation of the client groups with which nurses, midwives and health
visitors work, using priority clinical areas within their spheres of practice (as defined by National
Service Frameworks34). In relation to the recruitment of individuals our criteria for membership
included interest and ability to attend the meetings (see Box 2). We drew up a list of target voluntary
and consumer health organisations from our own knowledge, supplemented by Internet searches and
putting out a call for interest in the INVOLVE newsletter (see www.invo.org.uk).
3. Negotiating ways into organisations
Identify a link person within target organisations (2 months prior to first meeting)
We approached the target organisations with the aim of identifying individuals who might be able to
support recruitment. Generally, this involved contacting a main switchboard or information centre to find
out about various sections of the organisation. Usually we were able to obtain details of someone to
whom we could send further information however we quickly learnt to probe and pick up clues about
teams or individuals whose remit might be appropriate to our purposes. Within split locality or multi-site
organisations different sections sometimes acted independently of one another. Staff working in
headquarters of national organisations often wanted to put us in contact with regional offices, which
conflicted with our intention to maintain a national rather than local focus. Some organisations were
‘virtual' as opposed to being based in a discrete physical location, with staff working from home or other
organisational bases, in academic departments or on health service premises. This made it difficult to
identify where and when people worked, and how best they could be contacted.
Initial contact with link individuals (4-6 weeks prior to first meeting)
Having identified a link person for each organisation, we sent them some information about the service
user reference group (a one-page leaflet outlining the aims of the review, the role of the service user
group and what we were looking for in terms of individuals' experiences and interests). It incorporated
a return slip that individuals could use to express their interest in participating, and it also directed
readers to the project website for further information.
Follow-up and networking (2-3 weeks prior to first meeting)

In the case of non-response we followed up with a second telephone call or a reminder by email. This was
labour intensive and entailed negotiating access to nominated/interested individuals and having to ‘sell'
the project. We tried to emphasise the credibility of the study, explain the objectives of the review and
how we envisaged users could contribute, and make a case for an organisation's involvement. This direct
communication did seem to work. For example, a director acknowledged that she had disregarded our
information but on hearing more about the project it caught her interest. In one organisation we 'started
again' with recruitment and pitched the project to another officer who subsequently directed us to its
network of service user members.
Gaining an understanding of internal communication structures was essential. Some organisations

communicated with their members using newsletters. For example, in one organisation for people with a
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long-term condition (which provided training for members interested in getting involved in research) we
were offered space in their monthly newsletter to advertise the project. If we had not begun the process of
recruitment two months before the first meeting we would have been unable use this opportunity. Some
large ‘umbrella' organisations had well-established E-mail networks and distributed information to all
members the same day. In more than one organisation this generated high levels of interest far beyond
that which we could accommodate in the project. Although we could have asked organisations not to
approach all their members, we and they had no way of predicting the number of responses we would
receive. We also appreciated that for some organisations, providing equal opportunities to participate and
inclusiveness were part of organisational ethos.
4. Engaging with individuals
Selection of individuals (6-1 week prior to first meeting)

In some instances the selection process was straightforward, for example when we had just one
organisation that matched a client group/area of practice in our representation framework from which one
person was nominated. However, as we had targeted more organisations than we had places for and the
process of establishing interest was progressing at different rates decisions around selection became
complex. At one point we were simultaneously liaising with three organisations for the same client
group/area of practice even though our representation framework only allowed for one place. Similarly,
there were difficult decisions to be made about selection when we were contacted by a number of
individuals from the same organisation (an issue discussed below).
Providing confirmation and information (2 weeks prior to first meeting)

Two weeks before the first meeting we wrote to 25 individuals to formally confirm their place within the
group. Throughout the recruitment process, work was simultaneously being undertaken to plan for the
first meeting which also had implications for the time we could dedicate to recruitment. We sent
participants an outline agenda and general information about the event, and sought to find out about any
individual needs, for example, in relation to physical or sensory impairment, and dietary requirements.
Informing those respondents not selected (4-2 weeks prior to first meeting)
The high number of expressions of interest meant we had to turn down many people (over 80 including
enquiries made by email). We felt an ethical responsibility to provide a good reason for why individuals
had not been selected. We explained that we were trying to gain a range of views (on nursing, midwifery
and health visiting) by recruiting from different organisations, that we had limited numbers, and that
individuals had not been turned down for any personal reasons or for anything they had or had not
written on their ‘expression of interest' form. We thanked people for their time, apologised that they
could not be involved and offered to send them a summary of the findings. We contacted most
respondents by telephone or email to let them know of our decision quickly and before they made
arrangements to attend the first meeting.
LEARNING POINTS
Representation has multiple meanings and implications

We chose to develop a representation framework to serve as a guide to recruitment and to provide us
with a way of justifying who was and was not involved. We could have chosen to apply alternative
concepts of representation. For example, a democratic model of representation would have awarded one
person one vote however defining who should vote and on what issues would have been too
prescriptive. A similar political model, proportional representation, would have worked on the same
basis but we would have had to make decisions about relative influence of votes, and again what exactly
people were being asked to vote on would be difficult to define. A model of statistical representation,
for example randomly selecting individuals from patient lists, would have not allowed us to identify
individuals with the knowledge, skills and interests that we were aiming to identify. Given that we
wanted to gain service user views on the work of nurses, midwives and health visitors it was necessary
to develop an alternative model that incorporated ‘nominated membership' (members were sometimes
nominated by their organisations to participate); ‘dispositional representation' (some individuals were
involved by virtue of job role/organisational membership); representation of ‘shared interest' (including
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members from lobby groups); and ‘personal representation' (some individuals had personal experience
of receiving care from nurses, midwives or health visitors).
Our approach to recruitment placed responsibility for selecting candidates on organisations, not all of
which were prepared for this. For example, three members of a mental health organisation contacted us
by phone on the same day, having received details of the project by email from their group's
administrator. We explained that as places were limited we could only include one representative from
their organisation. One person asked, “How do we know who you will choose?” and another, “Who is
the best person of the three of us to attend?” We passed the decision back to the administrator and asked
that the organisation nominate someone, reminding them of our recruitment criteria. It was extremely
difficult for us to ‘reject' individuals who were keen to be involved whilst at the same time pursuing
organisations that were initially less enthusiastic. In contrast, a member of an organisation for a long-
term condition offered his candidacy as someone with multiple networks in the community who could
“fill several gaps” if we had a perspective missing. These events and others like them fed into our
learning about how particular forms of representation can be a facilitator or a barrier to the involvement
of some individuals. Being selected to represent an organisation and being selected by virtue of one's
membership of an organisation constitute different approaches to recruitment and mean different things
for who can be involved. It would have been helpful if we had provided more detail about what we were
asking individuals to represent in terms of the types of experiences, interventions, roles and relationships,
issues and trends we were interested in exploring.
An invitation to participate provokes a range of responses

We had not sufficiently anticipated the emotional responses that the notion of joining the group on behalf
of an organisation could provoke. This was made apparent in telephone conversations with some
individuals who questioned their own authority, ability or worthiness to represent their organisation. One
person told us they were interested but feared they were “too old”; another person described himself as
being “too stupid”. In these instances we reassured potential participants by saying that our aim was “to
make the experience accessible and informal, even enjoyable”. We were also aware that for some
individuals such reassurance was not necessary and could be perceived as being patronizing.
We were surprised at how often involvement was seen as opportunity. One person wanted to nominate a
friend whom they perceived to be deserving of the opportunity, explaining:
“I’ve got a 26 year old friend who has never worked. He is addicted to drugs and could do with
a break but he might not be able to attend all three meetings”. (Mental health service user,
telephone response to the initial call for participants)
This again required sensitivity. We thanked the person for their suggestion and explained that we would
prefer individuals to express interest themselves rather than be nominated by another person.
Principles have to be balanced with pragmatism

We originally planned to set the cut-off date for receiving expressions of interest at two weeks before the
first meeting. This timeframe would maximise the recruitment period but still give us time to select and
notify members of the group. However, a few weeks into recruitment we decided to allocate some places
as we were uncertain how much interest would be generated and it seemed reasonable to capture the
enthusiasm of the early responders. It also meant that individuals would keep the meeting date free and be
able to make travel arrangements. Then, as interest began to build, we decided to hold places for
organisations that might fit particular categories of our representation framework. This change in
procedure felt manipulative because it was difficult to decide which organisations we should hold places
for and for how long, yet we were also concerned that these places might not be filled. One person, who
contacted us a week before the group met, was dissatisfied with our explanation that we had already
allocated places for her area of interest and maintained she had a right to be considered. For us, this
highlighted the tensions of being consistent with selection processes and recruiting a group of service
users.
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A representation framework was useful for judging success

Members of the reference group had a high level of expertise including knowledge of research strategy
and management, consumer representation and research networks, user-controlled research, practitioner
education and development, service user and carer needs, statutory service provision in relation to
specific clinical conditions, patient and public involvement initiatives, and developing research training
for service users. It was evident that member's skills, abilities and knowledge surpassed the categories of
our representation framework. However, the representation framework help us to perceive those who
were not there: most notably the difference being between organisational representation and direct
representation of service users themselves. This was a particular point of reflection for one member of
the project team:
“I think it is very important to distinguish between people there as service users and those there
from organisations that work with service users who do not identify as service users themselves …
there are big issues in taking what non-service users say as indicative of what service users say.”
(Member of the project team)
Our experiences suggest that in the context of systematic review representation frameworks need to take
into consideration how informed or skilled service users need to be in relation to the task at hand. This
ultimately relates to the purpose of the review but it also provides a way of highlighting circumstances
where involvement of particular groups has been problematic. For example in our review children and
young people were not directly involved in the review, although two members of staff from an
organisation working with children did participate. Discussions with these organisations helped us to
appreciate the ethical implications and recognise that it was not feasible to facilitate the involvement of
children in this particular review as we did not have adequate time or resources. Neither did we
purposely set out to reach unaffiliated individuals. An important point here is that greater awareness of
such ‘structural' barriers to involvement could help to avoid the systematic reproduction of health
inequalities29.
Creating an environment conducive to involvement

Getting ready for user involvement involved setting a positive tone and developing a sense of reciprocity,
mutuality and respect. These aspects were not always as straightforward as we hoped. From the outset we
wanted to engage with service users quickly so that they could influence the review but we had not
accounted for a complex process of gaining ethical approval for their involvement. Our aim for the group
to work with us in a collaborative partnership was contested by the ethics committee's requirement that
we obtain informed consent, and further compounded by the use of a consent form predicated on the
signatory as a study subject. It was important to discuss expenses and payment details early on because
this can affect social security payments35, it took time to set up payment mechanisms and to discuss
people's preferences for payment. Getting these formal aspects of involvement right was vital for the
administration of the project but this was not conducive to a sense of partnership:
“The formalities of the research process, for example registering and consenting people, created
an immediate division between the project team and those we were asking to be equal partners in
the project … It was unpleasant to focus on getting consent and financial details from participants
rather then being able to spend this time welcoming people and making them feel their attendance
was valued. (Member of the project team)
Making personal contact was beneficial for building respect before involvement formally began. We were
sensitive to balancing the need to provide information and an agenda before the first meeting with being
open to users directing the work. We had prepared working papers (operational definitions and a project
flow chart) but held these back initially. Subsequently, some members said they would have liked more
information about the project and interpreted the lack of detail as the team being ill-prepared. Other
members felt it was appropriate to “tackle the issues together” and had not expected to receive detailed
information. Either way, it would have been better to explain our approach beforehand.
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IMPLICATIONS FOR FUTURE REVIEWS
It has been suggested that user involvement could be a quality indicator for systematic reviews 7. Given
the topic of the review presented here involving users was relevant and appropriate for defining its scope
and shaping the process and benefits were gained (see section on previous studies). However, for us
getting ready for involvement required dedicated thinking time at proposal stage and an application for
ethical approval that would not usually be required for a systematic review. Recruitment required
additional staffing (two researchers working full-time for six weeks) and finances, which might not
always be supported by review commissioners. Others have spent over two months recruiting to a service
user advisory group32. The overall process of creating opportunities for user involvement was very much
dependent on individual researcher's abilities to communicate the purpose and intentions of the review. It
was also vital to help people feel at ease, respected and acknowledged.
Although it worked for us, our approach might not fit other systematic reviews. There are alternative
ways to be responsive to users, such as including service user perspectives as data in a review, by
undertaking consultations about specific issues or emergent findings; or disseminating review findings to
user groups. The issues for user-led36 reviews may be somewhat different and this requires specific
attention. The main point that we can add is that developing a representation framework can help
researchers to reflect upon the concepts of representation they are using, plan an approach to recruitment,
identify potential access or exclusion issues and evaluate how their approach influences who is invited to
participate and which individuals become involved.
Establishing the service user reference group for this review saw us starting at a theoretical level,
conceptualising membership of the group in terms of the diversity of nursing, midwifery and health
visiting practice. We constructed and sought particular categorical notions of users by translating our
ideas into recruitment strategies targeted at patient/client groups. Members recruited through particular
organisations often had links to other organisations, networks or user groups. This exceeded our original
ideas about what individuals and the group collectively might represent. It was also significant that we
were liaising with different types of organisations (in terms of their remit, structure and links with
members) as this had a direct impact on how we were able to recruit and who was recruited.
In the context of having to seek ethical approval to work with a service user reference group
representation became a research governance issue as we attempted to argue that members' status was
different from the traditional research subject role. Despite this ambiguity involvement as manifested
through the service user reference group meant that a variety of perspectives was represented and service
users' stake in the issue was recognised.
Engagement between individual members of the project team and the service user group continues. For
example, three service users have joined a reference group for a project led by one of the team on
governance and incentives in primary care. These types of ‘grown relationships' raise new questions for
research about when to develop existing relationships and when to begin new ones.
Conclusions
Our experiences demonstrate that recruiting service users to a systematic review can be achieved but there
are theoretical, ethical and practical issues associated with ‘getting ready' to work together. An
overarching theme is that user involvement is about relationships and that these extend beyond the
boundaries of any particular systematic review. In our own study, the invitation to participate provoked a
range of responses in organisations and individuals, and our engagement with users was not confined to
those we selected to participate in the reference group. We have shown that decisions made at the
conceptual level and in the early stages of research design can impact on users and researchers in complex
and personal ways hence researchers have responsibilities even in embryonic and episodic relationships
with service users.
417
Appendices
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Acknowledgements
This article presents independent research commissioned by the National Institute for Health Research
(NIHR) Service Delivery and Organisation (SDO) Programme. The views expressed in this publication
are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The
NIHR SDO programme is funded by the Department of Health.
We would like to acknowledge the contribution of members of the service user reference group and their
organisations: Age Concern; AIMS (Association for Improvements in the Maternity Services); BLISS -
The premature baby charity; British Council for Disabled People; British Heart Foundation; Cancer
Research UK; Carers London/UK; Clifford Beers Foundation; Diabetes UK; Redbridge Primary Care
Trust; Voluntary Groups Advisory Council Diabetes UK; Friends of the Elderly; Folk.US; London
Voices & Croydon Voices; National Children's Bureau; National Childbirth Trust; Northumberland User
Voice; Ovacome; Patient and Public Involvement Forum Royal College of General Practitioners; Quality
Research in Dementia; Shaping our Lives; Values into Action. Guest advisors to the group were: Mr Tim
Twelvetree, Institute for Public Health Research and Policy; Ms Helen Hayes, INVOLVE Support Unit;
Ms Jayne Pyper, Ovacome. We would like to acknowledge and thank the researchers and service users
who responded to e-mail calls for information or provided interviews. Thanks to Gian Brown for
management of the project finances and the project website.
419
Appendices
Service user involvement in the design and undertaking of nursing, midwifery and
health visiting research
Smith E., Ross F., Donovan S., Manthorpe G., Brearley S., Sitzia J., Beresford P. (2008) International
Journal of Nursing Studies, 45, 298-315.
Abstract
Objectives: In the United Kingdom government policy recommends that service users (patients, carers
and the public) should be involved in all publicly funded health and social care research. This paper
provides the first analytical account of service user involvement in the design and undertaking of nursing,
midwifery and health visiting research in the UK. Design: The paper reports on a national multi-method
review funded by the NHS Service Delivery and Organisation R&D Programme. The timeframe was
April 2004 to March 2005. The final report is available from:
http://www.sdo.lshtm.ac.uk/nursingandmidwifery.htm Review methods/data: Initial searches of the health
and social care literature were used in discussions with researchers and service users to develop inclusion
criteria for the review and a framework for the analysis. Systematic searches of the literature were then
undertaken online and through library stacks (345 relevant documents were identified). Ongoing and
recently completed studies that had involved service users were identified through online databases (34
studies) and through a national consultation exercise (16 studies). Selected studies were followed up with
in-depth telephone interviews (n=11). A service user reference group (26 members) worked with the
project team to inform the scope of the review, support the identification of appropriate literature and
ongoing studies, reflect on the evidence and advise on outputs and dissemination. Results: A wealth of
information was gained about the context, drivers, concepts, approaches and outcomes of service user
involvement in research. This reveals a complex picture of different meanings and forms of service user
involvement in the design, undertaking and evaluation of nursing, midwifery and health visiting research.
Issues for future development include: establishing who is, or should be, involved and how can this be
achieved across the diversity of nursing, midwifery and health visiting research; how best to communicate
expectations, establish working relationships and find ways to feedback about impact; understanding new
forms of ethical issues and strategic/capacity issues. Conclusions: Because research is undertaken for
different reasons and in different contexts, it is not possible to say that involving service users will, or
should, always be undertaken in the same way to achieve the same benefits. Uniqueness of purpose is a
defining characteristic and strength of service user involvement in research. Researchers and research
organisations should explore purpose and potential benefits of different approaches in relation to the work
they do.
Key words: service user involvement, participative research, systematic review methods
What is already known about the topic?
In the United Kingdom government policy recommends that service users (patients, carers and the public)
should be involved in all publicly funded health and social care research.
Involving service users as active partners in research processes can help to achieve better quality research,
which might lead to better quality health services. However, little is known about which approaches work
best in different research contexts or under what circumstances successful outcomes can be achieved.
What this paper adds
This paper provides the first analytical account of service user involvement in the design and undertaking
of nursing, midwifery and health visiting research in the UK.
Key issues and challenges for the future development of service user involvement in research include the
need to understand debates about diversity, communication and ethical issues in this context.
420
Appendices
Researchers and research organisations can develop their capacity to work with service users in a number
of ways, such as; considering issues about diversity, communication, ethics, working relationships,
finances, education and training.
Introduction
Like motherhood and apple pie, involving service users (patients, carers and the public) in all aspects of
health and social care is internationally thought to be a good thing. In the United Kingdom (UK) National
Health Service (NHS) providers have a statutory duty to involve and consult with patients and the public
in service planning and operation, and in the development of proposals for changes (DH 2001a). This is
seen as a way of developing quality patient-centred services (DH 2004; DH 2005). Policies to involve
service users wherever possible in the design, conduct, analysis and reporting of health and social care
research (DH 2000, DH 2001b) can be considered one stream of this wider policy agenda.
Previous systematic reviews have brought new understanding about service user involvement in a wide
range of settings and contexts. For example, in the planning and development of health care (Crawford et
al. 2002), delivery and evaluation of mental health services (Simpson and House 2002), change
management (Crawford et al. 2003), health research and development agenda setting (Oliver et al. 2001)
and health research (Baxter et al. 2001; Boote et al. 2002). This paper provides the first analytical account
of service user involvement in the design and undertaking of nursing, midwifery and health visiting
(NM&HV) research in the UK. It is important to look at service user involvement in this context as it
might produce research that is more appropriate to building quality health services.
The paper is based on a national multi-method review of the evidence and current research, funded by the
NHS Service Delivery and Organisation R&D Programme. The review was known operationally as the
PIN project (to refer to patient and public involvement in nursing midwifery and health visiting research).
The timeframe was April 2004 to March 2005. The final report is available from:
http://www.sdo.lshtm.ac.uk/nursingandmidwifery.htm
The multi-method review
The aim of the review was to inform the development of service user involvement in the design and
undertaking of nursing, midwifery and health visiting research. The team that undertook the work came
from a range of research disciplines (including nursing, mental health, social work, social policy and
public involvement). Our different perspectives were helpful for drawing links to other research fields
and involvement contexts. Because the topic area was complex and developmental we chose to use a
multi- method approach to explore different aspects, perspectives and issues, namely:
Literature review: this comprised an initial search to identify issues for discussion at service user
reference group meetings (see below); the definition of inclusion criteria to carry out a full search; then
systematic searches of the literature (see Appendix 1). Sources of ongoing and recently completed
research were searched online (INVOLVE record of research projects www.invo.org.uk and the National
Research Register www.nrr.nhs.uk/search).
Consultations with professionals and research groups: a consultation exercise was carried out using a
web-based questionnaire, which was disseminated through 27 national email networks and was promoted
through professional and research networks (see final report for details). This was followed up with in-
depth telephone interviews with project leads for selected studies (n=11).
Service user involvement: We involved service user and carer advocacy groups in the project to inform
the scope of the review, support the identification of appropriate literature and ongoing studies, reflect on
the evidence and advise on outputs/dissemination. Our approach was to set up and support a service user
reference group specifically for the duration of the project. A service user representative (SB) chaired the
group. Members (26) were recruited to reflect the broad range of activities that nurses, midwives and
health visitors undertake, and the different client/patient/service user groups they work with.
Figure 1 illustrates how methods of the review interrelated, and informed subsequent stages. We followed
suggestions from a study of undertaking reviews about research methods (Lilford et al. 2001). We did not
aim to chase every last reference, but searched widely and in disparate databases. We used methods
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Appendices
beyond the review of data including networking and collection of primary data. Regular updates about the
project were placed in the INVOLVE newsletter and information was regularly posted to a project
website. Members of the project team and the service user reference group provided reflections about
their participation at three time points. It is not possible to explore these experiences in this paper but we
hope to publish them in the future.
Defining the scope of the review
From the outset, it was important to be clear about what we meant by ‘service user involvement in
nursing, midwifery and health visiting research' to be able to define the scope of the review and
communicate its purpose and limits. However, we faced the problem of needing to define a topic that we
were yet to explore. To overcome this we devised a series of working definitions (see final report), using
initial sweeps of the literature and consulting with researchers working in the area. Exploring each
element, or facet, of the review topic also helped us to build a search that would be sensitive to different
forms of language, synonyms and associated terms. We refined the scope and inclusion criteria as the
project progressed in discussion with members of the service user reference group and in response to new
understandings and insights. Some of the decisions we faced are described below.
The professional groups that ‘nursing, midwifery and health visiting' (NM&HV) are associated with in
the literature include midwives, nurses, health visitors, district nurses, school nurses, practice nurses,
mental health nurses, nurses for people with learning disabilities, occupational health nurses, students
within these professions, agency and temporary nursing staff, and health care assistants. The terms are
used to include staff working across a range of grades, from newly qualified to consultant level, and
specialities, such as mental health, learning disabilities and primary care. We perceived NM&HV to
include those working within the NHS, local authorities, including social care trusts and children's trusts,
within schools, independent and voluntary sectors schools.
We chose to define NM&HV research according to the professional activity being studied rather than
which professionals were undertaking the research. This is because not all NM&HV research is carried
out by nurses, midwives or health visitors. Also, nurse-researchers may be involved in research that is not
specifically connected to nursing, midwifery or health visiting, for example some clinical drug trials,
social science or policy research. The activities nurses, midwives and health visitors undertake include:
care, treatment, investigations, support, health promotion, public health and working for health in
communities. We were aware there is considerable overlap between NM&HV activities and many other
areas of professional working, particularly joint working at the interface of health and social care. We felt
it was important to include service user involvement in such work in the review. We also felt it was
important to include practice development activities, patient or community participation work, or the
implementation or utilization of research findings. This meant taking a broad definition of research,
namely: building knowledge to inform the development of practice, promotion of community health,
decisions on service development and innovation, workforce interventions, management or educational
practice.
Our position on what we meant by ‘service user' was informed by the literature. Department of Health
publications state that a service user is any person who has, is, or may access National Health Services or
independent sector health services in the United Kingdom (DH 1999). However, different terms and
concepts are in use in policy, professional and lay discourses and the terminology remains conceptually
and practically problematic because it positions people according to health services, rather than to society
or to their lives. Some people might not see themselves as service users or may never actually use, or be
able to access, a health service for different and complex reasons (Beresford 2005). In some situations the
terms ‘consumer', ‘lay person' or ‘patient' are used interchangeably with ‘service user' and to include the
users of social care or independent health services, or to include carers. (We used all of these key words
in the literature searches, as shown in Appendix 1). Alternative terms and concepts are used in different
countries so it is difficult to make international comparisons. Early on in the review we used the terms
‘service user' and ‘patients and the public' interchangeably, and often to include carers. We quickly
became aware that these terms have different implications for who is involved and what is meant by
involvement.
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Appendices
The term ‘service user involvement' (and sometimes ‘patient and public involvement') is used in policy
and research literature to describe a wide range of interactions between service users, health
professionals, service managers, researchers and educators. In research, service user involvement is
generally thought of as active participation in the research process. The language of ‘service user
involvement' positions service users as the group who are being asked to participate, they are the group
being brought into the world of research or service development (Beresford 2005). This position seems
inescapable and divisive but we were aware that service users may commission, lead, take responsibility,
drive, or evaluate research. The term is generally perceived to encompass these activities, as well as
involvement in ‘mainstream' professional researcher-led projects.
It was harder to demarcate theoretical boundaries between service user involvement in research and other
types of involvement activities, such as the involvement of service users in their own care or the delivery
of care of a relative, or in educational interventions. The funders of the review emphasised that we should
look at service user involvement in the design and undertaking of research. We took this to include
involvement in:
 funded or unfunded research projects, including programmes of work, postgraduate or doctoral
research;
 time-limited one-off involvement interactions between researchers and service users and ongoing
relationships;
 work described as ‘community development' where this has directly involved or had an impact on
nursing, midwifery or health visiting services;
 the systematic development of nursing, midwifery or health visiting services as the result of
research, but not in other broader types of service development;
 processes of evaluation; such as the evaluation of service delivery initiatives, research or educational
interventions;
 research about the design or evaluation of nurse, midwife or health visitor education or training.
We could not ignore, nor could we do full justice to, related issues about service user involvement in
research priority setting, research commissioning and tendering, or within ethical and scientific review
bodies.
The nature of the data
Searches of health and social care electronic databases identified 2,132 publications of which 345 were
judged to be relevant based on their titles/abstracts. Publications covered a wide range of theoretical
debates, discussions of social trends, policy analysis and practical issues. A relatively small number
(approximately a quarter) reported on research studies that had involved service users, but this was
sometimes to provide data in the project rather than contributing to the research process itself. Library
searches for chapters and books revealed a small number of documents (n=25), most of which were only
partially relevant to the scope of the review. Hard copies of all publications were attained and stored
alphabetically by first author.
A search of the INVOLVE record of ongoing or completed research projects (using the terms
nursing/midwifery) identified 11 relevant projects. These were predominantly about service user's views
of service provision, for example nurse prescribing in mental health services, residential care for people
with dementia, and mental health needs of children and young people. Other projects were evaluations of
professional practice (antenatal care), new specialist nursing roles (Multiple Sclerosis Specialist Nurse),
multidisciplinary education, and drug effectiveness (Parkinson's disease).
A search of the National Research Register (using the terms nursing/midwifery and user involvement)
identified 23 completed studies. These involved service users in the development of nurse-led services
(cancer care, community mental health, children and young people with a long term illness or physical
disability); developing information or guidance for professionals and service users; or establishing
processes of shared-decision making, such as user directed assessments among older people.
The national email calls received a total of 33 completed questionnaires. Of these, we chose not to include
16 because they did actively involve service users in the research process. Studies focused on different
clinical conditions and topics and ranged in scale from a national survey of academic departments to
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Appendices
practice based projects undertaken as part of a higher degree. Telephone interviews (ranging from 30-90
minutes in length) with 11 selected respondents provided detailed information about rationale, approach,
challenges, and benefits of service user involvement at a project level.
Analysis
We have described our approach to using different methods to analyse and synthesise information from a
wide range of sources as a multi-method review. We were aware that different researchers have
developed methods for undertaking work of this nature for example, Britten et al. (2002) and Greenhalgh
(2005). Although these approaches guided our thinking they did not always seem to fit the purpose of
what we were trying to achieve. Our analysis aimed to identify the most relevant issues, points of
interest, insights and ideas about the topic, with a view to informing future development of service user
involvement in NM&HV research. Our approach was to retrieve information relating to different themes
(guided by a Review Framework, Appendix 2) and making use of qualitative methods of synthesis.
Because the review timeframe did not allow us to explore different meanings in other cultural and health
care contexts we focused on publications relating to health, medical and social research in the UK. We
used a broadly structured approach to extract information from the documents (making use of a Review
Tool, Appendix 3). We coded and sorted the data using reference management software (Endnote 9) and
literature tables in Microsoft Word. These software packages enabled us to annotate and describe the type
and source of the information in terms of opinion, policy, research based, or systematic review findings.
Because the majority of documents were discursive or were accounts of qualitative research it was not
appropriate to apply a methodological weighting criteria to the information. We were more interested in
pursuing themes within and across different source documents. To do this we maintained alphabetized
hard copies of journal articles, reports/policy documents and interview transcripts and coded sections of
each document.
Summary of findings
Our approach to presenting the information in the final report was to align each chapter within the themed
categories shown in the review framework (Appendix 2). Here, it is only possible to describe some of the
key issues and challenges for understanding service user involvement in NM&HV research and putting it
into practice. Similarly, we cannot provide details of each document, or study included in the review; we
have referenced key sources to illustrate the issues we are choosing to focus on here.
Context and drivers
Service user involvement in research has been influenced by a complex interplay of social and political
ideas and movements. Other authors have described these factors so we will only provide a brief
overview of the most significant influences: consumerism and participation, changes in patient-
professional relations, growing public concerns and expectations about research, service users using
research, and changes in the way that research is undertaken.
Consumerism and participation: The literature shows that from the 1980's, health system reform was on
the agenda in Australia, across Europe and North America. Ideas about consumerism in health services
was being driven by attempts to meet ever-increasing health service demands in the face of cost
containment pressures (Segal 1998). Consumerism brought with it the broad reawakening of the idea of
participation and a new emphasis on the ‘rights and responsibilities' of citizens (Croft and Beresford
1996). Across a range of public service structures the focus of governance began to shift towards various
forms of co-production with other agencies and with citizens themselves through partnerships,
community involvement and strategies of participation (Higgins 1993). In health services, consumerism
has been interpreted as patients having more choice about how their care is provided, and service
providers being more responsive to these choices (Almond 2001). Patient satisfaction has become a
popular performance indicator, but there are problems with the way it has been applied (Sitzia and Wood
1997). The influence of consumerism is less clear in relation to health research because research but it is
likely that views about consumer rights and provider responsiveness have filtered into
consumer/managerially-led ideologies of service user involvement in research (Beresford 2003).
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Appendices
Changes in patient-professional relations at the clinical level indicate a widespread move to involve
people in decisions about their own health. Shifts in health care towards protection and promotion of
health and prevention of illness further encourage self knowledge and responsibility (Kuss et al. 1997).
Concepts such as ‘patient-centred care' and ‘patient participation' have become commonplace in
professional literature (Coulter 1999). Participation forms part of the language of nursing, midwifery and
health visiting practice and has been heralded as a means of enhancing decision-making and enriching
quality of life. Nursing, midwifery and health visiting research has contributed to the evidence base for
patient communication and patient decision making in clinical care and to the development of patient
centred services. Principals of respect and honour for human dignity have been perceived as offering
opportunities to further develop theoretical frameworks that transcend paternalistic practices (Cody
2003).
(i) Growing public concern and expectations about research: The literature also tells a story about the
changing relationship between the public and research communities. In 1995 Professor Sir Iain Chalmers
wrote about a belief that ‘the public might be served more effectively by research and researchers if there
was greater lay involvement at all stages of the research process' (Chalmers 1995). The development of
the Research Governance Framework for Health and Social Care (DH 2001b) marked a political response
to a growing public disquiet concerning standards of ethics, honesty and general conduct in clinical
practice and research. High profile inquiries into incidents in research and clinical practice, such as the
child deaths associated with heart surgery in Bristol (The Bristol Royal Infirmary Inquiry 2001) and the
retention of children's body parts for research at Alder Hey Hospital in Liverpool (DH 2001c) have led to
recommendations that public interests should be embedded in all NHS organisations (Coulter 2002). The
establishment in late 1995 of a Department of Health R&D Standing Advisory Group on Consumer
Involvement, later known as ‘Consumers in NHS Research' and now as ‘INVOLVE', has provided
guidance and support for those interested in involving service users in research. There have been
associated policy changes to involve service users in processes of research commissioning and regulation
(DH 2001d). Defining the priorities of health research programmes and research commissioning is an area
to which service users have contributed (Oliver 1999; Oliver et al. 2001; O'Donnell and Entwistle 2004)
and nursing and midwifery research (Smith et al. 2005).
(ii) Changes in the way research is undertaken: In some fields of health research there are long traditions
of user-led movements. Accounts have been provided about the work and activities of different user or
consumer groups in relation to gaining influence over health research (Beresford 2005). User-movements,
emancipatory research, feminist research, survivor research, and researchers with physical or mental
health disabilities have undertaken research to improve lives (Mercer 2002). These forms of research
have been linked with concepts of social justice, democratic rights and empowerment (Rodgers 1994).
Ideas about empowerment emerged from the 1960s onwards as researchers, predominantly from the fields
of mental health and disability, challenged assumptions and social relations of research production
(Oliver 1999). There is a strong tradition of community research in nursing, midwifery and health
visiting, such as in community health development (Chalmers and Bramadat 1996). Linked to
community development is the concept of practice development, which has been described as having an
ambiguous position in relation to both clinical practice and research (Clarke and Procter 1999), but
having a potentially ‘transforming power' on practice (Stainton et al. 1998). Participative research
methods have been used to give patients and members of the public a more active role in a wide range of
community and practice development activities. The literature shows that where researchers have made
use of these methods this has been beneficial for engaging service users and establishing working
relationships.
Conceptualizations and approaches
Different ideas and movements have led to a range of theories and approaches to service user
involvement in research. The following list of key papers not only shows the diversity of thinking but the
associations that have been drawn between involvement and concepts of participation, consumerism and
empowerment.
 A theoretical ladder of citizen participation has been developed to represent different levels of
control over decision-making processes with the poor in the United States (Arnstein 1969).
 Ideas about consumer-controlled research have been described (Matrice and Brown 1992).
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 Consultation has been perceived as a low level of service user involvement as the researcher has
control of the overall agenda (Rodgers 1994).
 The concept of empowerment and its use in nursing practice, education, research and health
promotion has been described as “a helping process, a partnership valuing self and others, mutual
decision making and freedom to make choices and accept responsibility” (Rodwell 1996).
 Different service user roles in research have been interpreted as corresponding with concepts of
power and empowerment (Barnes and Walker 1996).
 A hierarchical relationship between concepts of involvement, participation and partnership has been
percieved in relation to nursing practice (Cahill 1996).
 Classification of service users based on ways of identifying and involving people in the research
(Entwistle et al. 1998).
 A participation continuum, has been used to relate the concepts of user involvement in decision-
making to consumerist/democratic concepts of involvement in health service provision (Hickey and
Kipping 1998).
 Classification of service users according to their possible involvement contributions (Dixon et al.
1999).
 The amount of control service users have over decision-making has been related to different service
user roles or activities (Poulton 1999).
 A framework of service user involvement has been devised based on the stages of the research
process (Hanley et al. 2000).
 Higherarchical levels of consumer involvement in health research – from consultation, to
collaboration and consumer control – has been linked to the increased empowerment of consumers
within the research process (Boote et al. 2002).
 Different ideologies of involvement have been defined as managerial/regulatory and
empowerment/democratic (Beresford 2003).
Different concepts of service user involvement link to different perspectives about the way research is
conducted and for whom it is undertaken. We found many detailed accounts of different approaches to
service user involvement in the literature. For example, involving older people as research advisors in a
project about falls (Ross et al. 2005), creating user groups in midwifery (Wray 2003) and setting up a
service user advisory group in diabetes (Rhodes et al. 2001). Others have looked at the involvement
issues for particular groups of people. For example, ways of involving people with learning disabilities
(Kiernan 1999), people with intellectual disability (Cambridge and Forrester-Jones 2003), people with a
visual impairment (Duckett and Pratt 2001), patients receiving palliative care (Karim 2000), those with
advanced HIV infection (Yates et al. 1997), and people near the end of life (Agrawal 2003). These are
just a few examples.
We found that NM&HV studies often made reference to these conceptualizations but few sought to test or
contribute to them. The rationale or reasons for involving service users tended to be general statements
about making the research relevant to people's lives or empowering service users. Not all respondents
agreed that service user involvement should have an emancipatory or therapeutic function, in terms of
providing better health or social opportunities for participants. This supports previous suggestions that
there is a need to conceptualise involvement according to whether empowerment is an explicit aim of the
research (Beresford 2005). We will revisit this point in the section of this paper on outcomes.
We found examples of service user involvement in conducting and interpreting randomised controlled
trials. Involvement in this context can help to refine research questions, improve the quality of patient
information, and make trials more relevant to the needs of patients (Hanley et al. 2001). Participants in
clinical trials have also been asked to provide information about the experience of being involved in, such
as in cancer care (Donovan et al. 2002; Thornton et al. 2003) and angina management (Dougherty et al.
1999). Although these activities can mean that service users help to improve the experience of
participating in research they may have little say about the design or conduct of the research. In other
areas of research participants experiences of being involved have been used to improve approaches to
involvement, for example in community mental health research projects (e.g. Reeve et al. 2002; Ramon
2000). Current conceptualisations might not reflect that within any single research project different
service users might be involved for different reasons, undertake different roles or activities, or that
426
Appendices
involvement might be going on at several different levels of decision-making, shift between levels, or
graduate from one level to another.
A further area of conceptual weakness is the relationship between research data and service user
involvement. Traditionally, as the subjects of research service users and have provided views and
experiences about health and illness. Through the process of research, and generally under the control of
professionals, this information has been transformed to produce knowledge bases, generate indicators of
health and quality of life (Edwards and Courtney 2003), or to predict health choices (Glasby and
Littlechild 2001). Service user knowledge has only been recognised as evidence when established
research methods have been used to ensure objectivity, generalisability and rigor. Although mainstream
interest in service user involvement emphasises feeding lay knowledge and experiences into existing
research structures and paradigms (Beresford 2002) we have found that at a project level service user
involvement challenges established ideas about the construction of evidence. Information from NM&HV
projects reveals an imprecise and undefined boundary between what can be judged to be data in a project
and a decision about the research. Research reported that service users broadly influenced which types of
knowledge were fed into the research and when, and often in response to emergent research findings. This
could be perceived as an epistemological shift between service users being providers of knowledge and
service users defining what knowledge is (which information is important). Researchers who perceived
this difference valued the interplay between the expression of service user views through the research
data and the input of service user knowledge in decision-making. They saw this as advantageous rather
than methodologically problematic.
Taken together, the literature and our analysis of ongoing studies reveals a need to understand how
different approaches to involvement can best be devised or developed to suit a particular research context.
Service user involvement can be perceived as happening in the design of research (planning or decision-
making), undertaking (carrying out research activities) or in evaluation of research or service user
involvement in research. We have simplified these ideas schematically here (Figure 2) to emphasise the
multiple domains of service user involvement in research. These are not necessarily sequential activities
and different groups of service users might be involved in one or more of these activities in any research
project, or not at all. The activities indicated should not be viewed as discrete or unconnected from each
other or from related processes of prioritising, commissioning or regulating research. This
conceptualisation can accommodate different understandings about the purpose and outcomes of service
user involvement. It may offer a model for investigating approaches to service user involvement in
relation to factors such as research topics, service user/client group, and the organisation or setting in
which the research is taking place.
Outcomes and impact
Conceptualising and measuring the outcomes of service user involvement in research is complex for a
number of reasons. There are different views about what the purpose and goals of service user
involvement and this leads to different perspectives about what the outcomes or impact of service user
involvement should be. At one level fulfilling a policy requirement or a condition of research funding for
service user involvement might be considered to be an outcome. Although policy might be an initial
stimulus for involvement activities purely involving people for these reasons has been perceived as being
tokenistic. The accounts of involvement projects included in the review tend to emphasize that a range of
positive outcomes had become apparent as the work progressed. Few identified negative aspects of
involvement, reflecting previous observations that regressive elements of involvement are rarely reported
(Beresford 2003).
Another reported outcome is that research is more relevant to the groups that it intends to inform or the
communities it intends to serve. This could be thought of as improving the social credibility of the
research. This perspective links to public perceptions of the value of research (Maurin 1990). The
application of research in practice and the efficient use of resources seem to be debates that stimulate
public interest. Public concerns might be mediated if service users are involved in, or there is
transparency and public support for, deciding research priorities and defining research questions.
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Appendices
There is clear evidence that involving service users can help to ensure that research processes or methods
are acceptable to participants. This perspective of outcomes could be described as improving the social
integrity of research. It is an idea that encompasses issues about ethical ways of working and research
governance but it also seems to include questions about the moral values of the research and the conduct
of research projects. For example service user involvement could enable a research project to be
conducted in a way that is sensitive to different cultures or beliefs of participants. It can also help to
identify potential ethical issues before they arise (Entwistle et al. 2002).
Outcomes of service user involvement have also been described in terms of benefits for research
processes. Involving service users at a design stage can help to develop research approaches or methods
that suit a particular research context and participants in the research. Researchers have reported
difficulties with involving service users at a design stage because of not wanting to raise service users'
expectations that the research will be funded, or not having the time or resources to involve service users
before the research has been funded. Beresford (2003) makes a case for more equal access to funding for
user-controlled research. This may help to overcome these problems but it raises different issues about the
processes through which research is commissioned. Service users have been involved in developing and
piloting data collection tools, designing questionnaires and deciding how data will be collected. In
questionnaire design this can help to validate the questionnaire in terms of the language being used, the
appropriateness of the questions being asked and the method of collection, leading to improved response
rates (Nicholson et al. 2001). In a research project that involved patients in developing assessment
practices for patient-centred treatment goals in wound care this highlighted differences between
professional and patient views of quality of care and quality of life that were fed back into the design of
assessment practices (Browne et al. 2004). Service users may also have privileged access to a particular
population or community group and may be able to facilitate access (Elliot et al. 2002; France 2000). Our
consultations with researchers showed that connecting with community leaders, patient networks or
voluntary organisations is a good method of engaging seldom heard groups in research. For example, one
study involved South Asian women as co-researchers to help access and recruit women who had
experienced post-natal depression, which is a culturally sensitive topic. Previous research on peer
interviewing shows that training (particularly ethical/confidentiality awareness), structured data collection
methods and the characteristics of participants in the research can influence the quality of the data
collected (Elliott et al. 2002). Examples of the involvement of service users in the interpretation of
research data are difficult to find in the literature. Our interviews with researchers revealed that some
qualitative research projects and evaluation studies have involved service users in identifying questions or
issues for the analysis to address; naming or creating categories with which to analyse the data; providing
a perspective on the categories chosen for use in an analysis; identifying issues or themes within the data;
checking a researcher's application of categories to a transcript. The literature shows that involving
service users in the dissemination of research findings, for example co-presenting a paper at a conference,
can mean that research has a greater impact on practice or research audiences and can make research
findings more accessible (Flaskerud and Anderson 1999).
There can be benefits for service users who are involved in research. Such outcomes have been thought
of as therapeutic or empowerment, and could be described as improving life chances. For example,
participation has helped some patients with cancer to construct their lives meaningfully by providing a
supportive structure and enabling hope (Moore 2001). The term empowerment is frequently used to
describe what service users might gain from being involved in research. However, the difficulty with
statements about empowerment is that different people interpret the concept in different ways and saying
‘service users were empowered' might be over simplifying the processes involved. And, as previously
stated not all researchers believe that empowerment should be an explicit aim of involvement. Indeed, it
is questionable as to whether anyone can judge whether another person has been empowered. Some
aspects of being involved in research might feel empowering to some service users but other aspects
might feel disempowering. If a service user describes feeling empowered as a result of their involvement,
this is likely to be an indication of a positive underlying process that warrants further explanation.
An interesting aspect of outcomes is where service users have defined which outcomes involvement
should aim to achieve. This is where outcome and involvement discourses could be perceived as coming
together. From the perspective of the service user reference group for this project, positive outcomes of
involvement were felt to be that service user perspectives are valued and research responds to views and
428
Appendices
concerns. Involvement in research was seen as a key way of informing the development of practice and
service provision, to ensure services are relevant to the lives of service users. Service user involvement
was perceived to be about setting safe and acceptable boundaries for research and changing research to a
process that creates opportunities for personal development and growth.
Outcomes of involving service users in research may also be described in terms of processes of change.
Service user involvement in research might lead to changes to research cultures or organisational
structures. Change might also occur to individual people's perceptions and understandings about research
or service user involvement. Ongoing iterative benefits might include the impact of involvement on others
not directly involved in the research, for example clinicians, policy makers, people's families or friends.
Taken together, these perspectives of outcomes show that service user involvement is about setting safe
and acceptable boundaries for research, gaining benefits for the research process, and considering the
positive opportunities that research processes might offer for researchers and service users. It is difficult
to predict which of these outcomes can be achieved in any particular project because of the unique
qualities of different research contexts, different approaches to involvement and the complexity of
research relationships (London Primary Care Studies Programme 2005). Service user involvement is not
an intervention that might be refined and tested. Relationships with service users do not lend themselves
to randomised or comparative research methods. The influence of service users' knowledge during the
research cannot be easily identified and it is difficult to attribute any change or impact directly to their
involvement. Service user involvement in research is undoubtedly complex, dynamic and changing.
Developing concepts and approaches to involvement requires expanding and connecting learning beyond
individual research projects.
Challenges for future development
Diversity
The service user reference group for this project emphasised a fundamental, but often overlooked fact,
that service users have diverse perspectives, experiences, expectations and interests. Working with one
group does not provide a definitive service user view. If a different group of service users were involved
this would lead to different ways of working and outcomes. It is important for researchers to think about
service user involvement in relation to the purpose, aims and context of any proposed research. Decisions
about who are the most appropriate people to involve should be explored, preferably with service user
representatives themselves. It is important to be clear about the reasons why particular people are
involved and whether they are being asked to contribute personal perspectives or to represent a wider
group of service users. Although there are problems of defining who service users represent, we have
found that accounts of research projects often provide detailed descriptions of who has been involved, in
terms of health status, ethnic or cultural qualities, where people live or locality, gender, age, interests,
and so on. Such descriptions are beneficial for understanding debates about who is, or should be,
involved in research. Previous accounts can also provide valuable information about ways of approaching
different service users, raising awareness, generating interest and keeping people involved.
Communication
All of the groups involved in the review told us that service users need support and information about
getting involved, for example guidance on what will be expected of them and what their contribution to
the research process might be. Researchers explained that it is helpful to provide written information and
to discuss any issues with individuals before they choose to get involved. Informing service users about
the impact their involvement is having helps to show them that their contribution is valued and can keep
them interested and involved. We found that feedback could be provided throughout the research process
and using a range of methods, for example newsletters, verbal project updates or a website. Related to
this, service users were often given the opportunity to comment on any publications, presentations or
outputs from the research, or in producing outputs and disseminating findings to a range of audiences.
429
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Ethical issues
Our discussions with researchers have shown that service user involvement raises new and different
ethical issues for research. Service user involvement has implications for the ethical conduct of research
and governance responsibilities. Ethical issues are often complex and ethical responsibilities can be
ambiguous. Where service users are involved as co-researchers or active members of project teams there
is a need to address issues about anonymity, consent, data protection and duty of care; both on the part of
service users and to protect other participants in the research. The ethical issues of providing, or not
providing, payments to research participants are not well defined. Some authors have raised particular
issues such as the effects of financial incentives on recruitment (Erlen et al. 1999). Payment issues are
different in different research contexts and it is difficult to establish parity. We have found that service
users differ widely in their expectations and perceptions about payment; any discussion about payment
should be considered personal and sensitive and treated confidentially. It requires explaining why
payments are being offered, which budgets payments will be made from, options for where or whom
payments can be made to (e.g. consumer organisations or charities), and discussing other forms of
recognition and reward (DH 2006).
Capacity
A range of social, cultural and economic resources are required to support service user involvement in
research. The process of developing research relationships tends to take place against a backdrop of
research traditions and norms, which might present obstacles to collaboration or offer opportunities for
innovation (Reed et al. 2004). Research cultures may emphasise values that conflict with participative
approaches (Gray et al. 2000) but new forms of research relationships can emerge (Liberty et al. 1999).
One such example is the contribution that service users with formal academic qualifications and research
experience can offer. In mental health research, academic consumer researchers have the potential to
increase the relevance of mental health research, to bridge the gap between the academic and consumer
communities and to contribute to the process of destigmatizing mental disorders (Griffiths et al. 2003).
We have found that in NM&HV research, decisions about whether to involve service users are generally
made by lead researchers or principal investigators at proposal stage. Service user involvement is still
generally perceived to be a specialist area, or to only be appropriate to particular types of research.
Researchers might have to negotiate and defend their decisions to involve service users in relation to
organisational priorities and objectives of their employing organisation or research funding source.
Redefining roles and responsibilities is complex because professional power will always be a feature of
both the caring professions and research cultures (Hugman 1994). Clinical relationships introduce a
particular dimension to research relationships with service users. Nurse, midwife or health visitor
researchers often need to combine their research role with their clinical roles and this duality is a potential
cause of ambiguity and conflict (Coghlan and Casey 2001). Researchers need to be aware of processes of
negotiation, mutuality and respect in their work with service users. Principles about service user
involvement can be used to guide practice and help researchers develop acceptable working practices
(Telford et al. 2004).
Research organisations can strategically address issues of service user involvement in relation to the work
they undertake (see Stevens et al. 2003, Ghersi 2002), and this might enable researchers and service users
to perceive how their work links to a wider set of organisational values. There are also practical issues for
research organisations to address. Involving service users requires building greater flexibility in to
research in relation to the need for flexible timescales and the provision of additional project support
(Faulkner 2004). Little is known about how organisational factors such as patterns of working and job
role pressures influence whether service users are involved in research. Research organisations need to
consider the economic implications of service user involvement when costing research proposals and
managing research budgets.
Education and training
Working in new ways can present education and training needs for researchers (Hanley 2005). Nurses and
midwives may receive some training about research and the principles of participation, such as
430
Appendices
communication training and research methods (Fox 2003). Other transferable skills, such as advocacy,
quality assurance, and understanding health beliefs, are generally part of professional training.
Community-based research projects have been used as a method of teaching nursing student's skills for
working in partnership with individuals, communities and other professionals (Kelley 1995). However,
these forms of training are unlikely to provide the specific skills required to involve service users in
research. New courses in service user involvement in research may flow from a growing interest in
patient participation in interprofessional education (Barnes 2000), collaborative student/patient projects
(Bennett and Baikie 2003) or patient involvement in educational assessment (Felton and Stickley 2004).
Conclusions
This review has contextualised service user involvement in nursing, midwifery and health visiting
research. It has brought together disparate information that has previously been obscured by diverse
terminology and meanings. Systematic and reproducible methods were used for the literature searches,
but other parts of the review were less structured and dependent on the experiences and knowledge of
people who were involved at the time. Undertaking the national consultation and interviews with project
leads were highly beneficial for identifying and interpreting key issues for practice, ideas, suggestions
and ways forward. Working with members of the service user reference group connected the project with
specific consumer concerns, issues and perspectives; influenced the project by contributing to developing
priorities and principles; were critical friends, challenging and stimulating; and provided advice about the
best ways of disseminating findings through different networks.
The diverse range of concepts and approaches to service user involvement in research makes it difficult to
draw links between rationale and outcomes. Because NM&HV research is undertaken for different
purposes and in different contexts, it is not possible to say that involving service users will, or should,
always be undertaken in the same way to achieve the same benefits. The notions of outcomes and impact
are themselves complex and often described as unanticipated. The development of theory and practice in
service user involvement relies on understanding which approaches are successful in which research
contexts and cultures. However, there is a careful balance to be struck between making use of
generalisable rules and not compromising the uniqueness of purpose that seems to be a defining
characteristic and strength of service user involvement in research.
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Acknowledgements
The project was funded by the NHS Service Delivery and Organisation Nursing and Midwifery Subgroup
through a process of open tender.
We would like to acknowledge the contribution of members of the service user reference group and their
organisations: Age Concern; AIMS (Association for Improvements in the Maternity Services); BLISS -
The premature baby charity; British Council for Disabled People; British Heart Foundation; Cancer
Research UK; Carers London/UK; Clifford Beers Foundation; Diabetes UK; Redbridge Primary Care
Trust; Voluntary Groups Advisory Council Diabetes UK; Friends of the Elderly; Folk.US; London
Voices & Croydon Voices; National Children's Bureau; National Childbirth Trust; National Childbirth
Trust; Northumberland User Voice; Ovacome; Patient and Public Involvement Forum Royal College of
General Practitioners; Quality Research in Dementia; Shaping our Lives; Values into Action. Guest
advisors to the group were: Mr Tim Twelvetree, Institute for Public Health Research and Policy; Ms
Helen Hayes, INVOLVE Support Unit; Ms Jayne Pyper, Ovacome.
We would like to acknowledge and thank the researchers and service users who responded to e-mail calls
for information or provided interviews. Gian Brown managed project finances and the project website.
We would like to thank the three anonymous peer reviewers of the final report for their comments.
434
Appendices
Appendix 1: Key search terms and Index terms
Consumer Nurse
Words used to
Participation Nursing research
identify database
User Research
index terms
involvement Health
Patient
Consumer OR User OR
Client OR Patient OR
Public OR Carer OR Lay
Nurs$ adj3 research
adj3/SAME AN OR
Key search terms
D Nurs$ adj3 practice development
Participat$ OR Involve$ OR
OR Empower$ OR Nurs$ adj3 community development
Collaborat$ OR Consult$
Notes:
Different electronic databases use different index terms to categorise publications. Key words were used to identify
index terms and then these categories were individually searched.
The wildcard function ($) was used to search for multiple word endings. An adjacency operator was used to search
for combinations of words with 1 to 3 words separation.
Electronic databases searched included: AMED (Allied and Complementary Medicine) 1985 to July 2004 (133
papers), British Nursing Index 1985 to July 2004 (136 papers), CINAHL (Cumulative Index to Nursing & Allied
Health Literature) 1982 to July Week 4 2004 (79 papers), EMBASE 1980 to 2004 Week 31 (111 papers),
MEDLINE
1966 to July Week 4 2004 (1078 papers), PsychINFO 1985 to July Week 4 2004 (114 papers), Health Management
Information Consortium (HMIC) (96 papers), ISI Web of Science 1990-2004 (187 papers). Additional database
searches of AgeInfo, Applied Social Sciences Index and Abstracts for Health, British Education Index, Care Data (via
Electronic Library for Social Care), Cochrane Library, ERIC (educational database), Health Promis (UK health
promotion), IBSS (social science), Internurse.com, National Electronic Library for Health, Social Service Abstracts,
revealed a further papers.
435
Appendices
Appendix 2: Review Framework
CONTEXT/BACKGROUND
Philosophical issues: Philosophical reasoning, ideologies and beliefs that underlie theories of user involvement.
This might include concepts of society, democracy, governance, rights, efficacy,
empowerment, inclusion etc.
Political issues: Implications of policy developments.

Links between user involvement and political drives towards a consumer-citizen culture.
Meanings: The use of terminology or concepts associated with user involvement, for
example distinctions between ‘providers' and ‘service users'.
Commissioning: Issues relating to the way research is commissioned e.g. funding streams/programmes.
The involvement of service users in commissioning e.g. identifying priorities for research.
Commissioning strategies that enable service user involvement.
Research issues: When does research begin?

The difference between service development/research and evaluation.
What is nursing, midwifery and health visiting research?
The difference between user involvement in research and research on user involvement.
Funding: Funding of involvement an organisational level, e.g. creating new roles, project grants.
METHODS ISSUES
Purpose: The rationale or reasons given for involving service users within a specific project. These
might not be based on known outcomes and could include to improve quality of process
or to produce research outcomes that are more relevant to people's lives.
Topic of inquiry: The topic of the research e.g. clinical area, client group, service setting etc.
Setting: Issues about the organisation or setting in which the research is taking place e.g. service
setting, community setting, partnerships.
Ethics: Anonymity, data protection, safety, duty of care, ownership of data/knowledge. Gaining
ethical approval. Research governance.
Organisational responsibility and accountability. Use of guiding principles.
Consent: Informed consent, consent to participate/consent to use information, appropriateness of

consent. When to breech consent. Capacity to consent.
Roles: The stage at which service users are involved.

The nature of involvement e.g. advisory group, individual representative on board
Responsibilities.
Activities: What are service users doing? The activities service users are involved in e.g. design, data
collection, analysis, publication etc.
Involvement in recording or evaluating the process e.g. user diaries, reflection.
Recruitment: ‘Representation' issues. Determining who is/should be involved.

Ways of approaching different groups/individuals e.g. recruitment through networks/
organisations.
Raising awareness, generating interest. Providing information prior to involvement.
Maintaining interest and keeping people involved.
Enablement: Concepts of diversity and inclusion.

The use of methods/ways of project working that allow service users to be involved.
Strategies for involving people from hard to reach groups.
Barriers for particular groups of service users.
Payments: Funding service users for their time and participation.
Training/support: Training and support issues for service users to enable people to be involved.
436
Appendices
Working relations: Professional/lay relations.

Communication issues.
Explaining why users are (invited to be) involved.
Explaining why the research is being done.
Clarity about boundaries.
Honesty about what is possible
Acknowledging different values.
Decision-making: Identifying common objectives. Deciding courses of action. Identifying priorities for
action/investigation.
Feedback: Issues about methods of feeding back to participants about their involvement.
Developing approaches to evaluation, to track impact and establish which methodologies
are more amenable to different groups of people.
OUTCOMES
Impact: The impact of involvement on research process.
Unanticipated outcomes. Learning as a product of research.
The impact of involvement on service users involved e.g. perceptions of the significance
of their involvement
The impact of involvement on researchers, including emotional impact.
The impact of involvement on others not directly involved e.g.
commissioners/clinicians/wider public e.g. public understanding of science.
Outputs: The products of research e.g. publications, changes in policy/practice/ research.
Quality: Transferability, generalisability, validity etc.

Multiple perspectives – validity of interpretation.
Dissemination: Issues relating to dissemination of research findings or dissemination of learning about

research processes/involvement.
Generalisability: The use of the findings of user involvement projects in other research projects or contexts.
Transferability: Issues about the implications of findings to other contexts.
CAPACITY
Organisation: Factors associated with the organisation(s) that are conducting the research e.g. patterns
of working, job role pressures.
Researcher skills: Researcher support, skills, training etc.
Research culture: Issues about professional identity/roles. Power. Academic priorities/perspectives.

Redistributing power and modifying professional cultures.
Creating a dialogue between funders, patients, the public, providers and researchers.
Education: The development and design of educational packages to support researchers.
Financial: Issues about the financial implications of involving service users, added costs.
Sustainability: Issues associated with maintaining involvement.
437
Appendices
Appendix 3: literature reviewing tool
Author(s) of paper:
Which of the following TOPICs does the paper cover?
External issues Outcomes

Philosophical issues Impact
Political issues Outputs
Meanings Quality
Commissioning Dissemination
Research issues Generalisability
Funding Transferability
METHODS issues Capacity
Purpose Organisation
Ethics Researcher skills
Setting Research culture
Consent Education
Roles Financial
Activities Sustainability
Recruitment
Enablement
Payments
Training/support Other(s) ………………………………
Working relations
Decision-making
Feedback
Please summarise each of these issues below, making reference to particular paragraphs or pages in the
paper that highlight these.
Topic Issue Comments/reflections Page(s)
(Please add further rows to this table as necessary)
438
Appendices
Service User Involvement and Integrated Care Pathways

Smith E and Ross F. (2006) International Journal of Health Care Quality Assurance, 20 (3) 195-214.
Abstract
Purpose: Understanding patient's experiences of their interactions with health services is an important
step in building quality from within. This article looks at the possibilities for involving service users in
the development of the National Health Service in England through the structure of Integrated Care
Pathways (ICPs). Method/Approach: A systematic literature review was undertaken to identify how
patient experiences have been attained and used in three clinical areas: cataract care, hip replacement and
knee arthroscopy. The information was weighted according to methodological criteria and synthesized
according to the typical stages of each pathway. Key issues were summarised thematically across each
pathway. Findings: The findings relate to the use of patient views and experiences within organisational
structures, service development, methodological research, education and training. The article identifies
important issues of practical significance for involving service users in the planning and development of
patient focused ICPs: such as the diversity of patients, perspectives of continuity, information and patient
support and the need for methodological research. Research limitations/implications: The review is
limited in that the literature across all three pathways tends to report findings of small studies undertaken
in one clinical service or setting and most studies are not randomised or controlled. Originality/value: The
literature identified by the review contains important messages for both NHS policy and future research to
involve service users in the planned expansion and plurality of NHS care.
Key words: Service user involvement, patient experience, Integrated Care Pathway
Article type: Literature review.
Introduction
An ambition of United Kingdom (UK) health policy is to move the National Health Service (NHS) from a
service that does things to and for its patients to one that is patient-led (DH 2005). This article considers
the implications of a service-wide agenda for patient and public involvement (DH 2004) in relation to the
development of Integrated Care Pathways (ICPs). To begin, we must explain the terminology we are
choosing to use in this article.
Alternative definitions of care pathways have emerged as thinking has progressed in different contexts.
Originating from within acute hospital settings, the documented Care Pathway was devised as a plan or
Care Map in relation to a particular service setting or context of care giving. They were therefore,
concerned with relatively short periods in a patient's overall trajectory of health, for example Anticipatory
Recovery Pathways. During the second half of the 1990s this type of care pathway proliferated and new
roles for Care Pathway Coordinators were created. This type of care pathway development set out to
ensure locally agreed multidisciplinary practice, based on guidelines and evidence where available, for
specific patient groups. This type of care pathway may form all or part of the clinical record, document
the care given and facilitate the evaluation of outcomes for continuous quality improvement (NPA 1998).
Over the next few years the concept spread out of acute settings into other areas and the pathways took on
different forms, often representing a patient journey, encompassing or expanding beyond a period of a
patient's stay in hospital. The idea of process mapping became more popular, describing a patient's
journey through a system of healthcare for a specific condition. Recently, the European Pathway
Association has defined care pathways as a methodology for the mutual decision-making and organisation
of care for a well-defined group of patients during a well-defined period. Electronic care pathways are a
newer form of process decision-making that is supported by specialist information technology and
computer software. This article relates to broader concepts of care pathways, particularly the idea of the
Patient Focused ICP. We are not excluding other types of care pathways from our discussion, as they are
439
Appendices
one part of a patient's experience of health care provision. However, the concepts we are using will not
always fit with alternative understandings of care pathways.
The language of ‘service user involvement' is similarly characterised by alternative definitions and
understandings, which have been clearly described elsewhere. It is important to point out that different
people use different terms to define relationships between lay and professional groups for example
‘consumer' or ‘patient and public'. The language that is currently available does not adequately reflect the
diverse nature of these interactions and there is much work to be done to conceptualise service user
involvement at a personal and collective level in different contexts, such as care giving, service
development, education and research. We are following a trend in the research literature to use the term
‘service user involvement', which may differ from policy or service terminology, or the language used by
consumer groups or organisations. We acknowledge that the term ‘service user' does not adequately
reflect the diverse range of patients, carers, relatives, representatives and groups that it is used to define
(Beresford 2005). We use the term ‘patient experience' to emphasise a service user's own unique
experience of their health or health care, and consider this to be one source of information from which
knowledge may be developed.
Concepts of service user involvement have been devised according to the range of activities that service
users might be involved in. For example, one commonly used classification is– consultation,
collaboration, control. These conceptualisations identify higherarchical levels of involvement where
service users are perceived to have greater or lesser influence over decision-making (e.g. Arnstein 1969)
and links have been drawn to concepts of empowerment and consumerism. This may have lead to a view
that approaches that award service users more power are better or more morally desirable. The notion of
direct and indirect representation in decision-making (see Beresford 2005) may also focus thinking
towards developing mechanisms for active involvement. Although understanding such mechanisms is
important, more active approaches to involvement might not always be the most effective or appropriate
to the broad range of contexts and purposes in which it is developed.
Patient views and experiences are often gained through service-led consultation activities and they might
be perceived as relating to a lower level of service user involvement or classified as managerially led
involvement (Beresford 2003). Patient satisfaction surveys are one such example and we look at some of
the issues surrounding them later. Questions have been raised about whether such activities are
‘meaningful' or ‘true involvement'. However, we feel it is important not to exclude debates about the use
of patient views and experiences purely on the basis of the mechanisms by which they are attained. At a
fundamental level, understanding patient's experiences of their interactions with health services may help
to build quality from within and taking service user's perspectives into account may lead to better
targeted and more effective services, based on needs identified by patients themselves (Gott et al. 2000).
Inviting people to express their views and opinions can also have personal benefits such as feeling heard
(Rodwell 1996).
The relationship between concepts of service user involvement and patient's experiences of their care is
therefore overlapping but indistinct. Developing an understanding of the relationship is important because
it might help to connect knowledge held at an individual level (in the form of personal experience) with
service user involvement in decision-making at a collective/organisational level. The ways that such
knowledge is interpreted and incorporated in decisions about heath services is only beginning to be
recognised as part of understanding the purpose and value of service user involvement.
There are practical challenges for developing more patient-centred approaches to service design and
development, which stem from conceptual uncertainties about the purpose or goals of service user
involvement. Establishing suitable criteria by which to assess the process and outcomes of service user
involvement is challenging because different people hold different views about why service users should,
or should not, be involved (DH 2003). Building concepts of service user involvement in relation to
specific service initiatives, in this case ICPs, may help to devise purpose-appropriate methods for
involvement and criteria for evaluation (Hale 1997).
This article seeks to resolve some issues about how to draw on the views and experiences of service users
in the planning and improvement of ICPs and how the quality of the process and outcomes might be
440
Appendices
evaluated. We have used concepts drawn from the research literature – patient focused ICPs, diversity,
continuity, information and support – to highlight key themes for the use of patient experiences, as one
aspect of developing service user involvement. The discussion is informed by a literature review for three
specific pathways of health care provision; cataract care, hip replacement and knee arthroscopy. The aim
of the review was to consolidate the evidence for patient experiences according to each pathway and to
make use of more general findings about the methods and processes of attaining patient experiences (e.g.
reviews by Edwards 2000, Ryan et al. 2001, and Nicolson 2000).
A notable problem is ambiguity about the best ways to involve diverse groups of service users in different
contexts for different purposes, such as in the treatment and care of patients, identifying health needs
(Poulton 1999), developing or planning of health services (Crawford et al. 2002, Cooper et al. 2002,
Stevenson et al. 2004, Ryan et al. 2001), community decision-making and health research (Boote et al.
2002). Diversity is an important concept for both ICPs and service user involvement and it is therefore a
theme of our discussion. A clear influence in each of these areas has been an increased public expectation
for openness and accountability. People are seeking more say in how health services develop, what
services are provided and to what standards (NHS Executive 1996).
There has undoubtedly been a shift towards including patient's real and perceived expectations of care in
assessing quality, which we were interested in exploring in the literature review described here. Patient
and Public Involvement (PPI) is developing as a stream of work in NHS organisations in England (DH
1999) in response to a statutory duty to involve and consult patients and the public in service planning
and operation (DH 2001a). Patient experiences are generally sought about single aspects of a service or
care experience and these are rarely integrated with other efforts to improve services (DH 2003).
Attention has now turned to looking at quality of care over the course of a patient's health experiences as
a continuous process over time (Schmid and Conen 2000) and through the pathway of service responses.
This is inevitably more complex but is necessary because patients experience care as a system rather than
as isolated functional components. The concept of continuity is central to ICPs and to developing quality
in health services and it is a theme we use in our discussion. Integrated Care Pathways offer one
possibility for developing continuity of service user involvement as they take a wider view of patients'
interactions with health services. There is evidence to show that ICPs can improve the delivery of
healthcare interventions by providing evidence-based structures for clinical and managerial decisions
(Currie and Harvey 2000), for clinical audit (Nelson 1995), risk management (Wilson 1997, Nyatanga
and Holliman 2005) and benchmarking across organisations (Schmid and Conen 2000) as well as having
other benefits (see De Luc 2000, Grubnic 2003). The positive outcomes for clinical practice and patient
outcomes have been documented for a wide range of ICPs (National Electronic Library for Health,
Protocols & Care Pathways http://libraries.nelh.nhs.uk/pathways/).
Involving patients in their care and taking on board their views, has been identified as a specific aim of
using ICPs (Nelson 1995). There is evidence to show that ICPs can improve communication between
professionals and patients and their carers because they inform patients of their expected care (Campbell
et al. 1998, De Luc 2000, Nelson 1995). Patient's and carer's confidence can been raised by discussions
about the pathway of care (Nelson 1995). In some ICP evaluations, patient views have been used to
assess whether an ICP is effective at improving quality of care (Chou and Boldy 1999). Information and
support is a further theme of our discussion.
Generally, ICPs have been valued for their potential to provide a patient-focused approach to service
development. This has been described as ‘targeting all areas involved in the system of caring for patients,
to provide the right thing, at the right time and at the right price' (Nelson 1995). It has been argued those
developing ICPs should not only take into consideration the views of staff but also consider patient's
experiences (Currie 1998). Yet, there are relatively few published accounts of ICPs being developed in
partnership with patients (e.g. Nemeth 1998, Hughes 2002, Ahmad et al. 2002, Nelson 1995); by having a
patient/carer representative on the working party or liaising with relevant patient groups (Nyatanga and
Holliman 2005). We look at the concept of the Patient Focused ICPs in our discussion.
Challenges for involving service users in developing ICPs might include: understanding patient
experiences and translating these into improvements in services, recognising the added value of
combining clinical or specialist evidence with patient values and knowledge, or capacity issues for staff to
441
Appendices
be able to work in new ways with service users. A better understanding of the methods by which service
users can be involved could support progress in these areas (DH 2004). In this article we aim to identify
some of the most significant methodological issues.
Context of the literature review
A literature review was undertaken on behalf of the Commission of Health Improvement (shortly before it
was replaced by the Healthcare Commission) to better understand the relationship between patient
experiences and ICPs. The work was undertaken at the time a first wave of Independent sector Treatment
Centres (ITCs) was being commissioned to provide specific clinical services to the NHS. The purpose of
the literature review was to inform the development of assessment criteria for their inspection and review.
The development of treatment-specific services is considered by some to conflict with the notion of
patient-centred care (see Stewart 2001 for a definition), a concept that features strongly in government
policy and in ICP development. Concern has been expressed in the professional press about the
fragmentation and destabilisation of the NHS (Brettingham 2005), uncertainties about where
responsibility and accountability lie, and the possible undermining of patient's choices (Eaton 2005). We
were commissioned to review the literature in relation to patient experiences of cataract care, hip
replacement and knee arthroscopy. These were areas selected on the basis that they are elective
procedures that ITCs would be commissioned to provide for a large number of patients. The objectives of
the literature review were to:
- Describe the demographic characteristics of the population within each care pathway.
Identify and synthesize what is known about patient's views of access, provision and follow-up healthcare
in relation to these pathways.
- Classify and synthesize what is known about the methodologies that have been used successfully to
gather the views of the populations within these pathways.
- Categorize tools or instruments that have been used to gather the views of the population within these
pathways.
The purpose of this article is not to report the details of the findings, which it would not be possible to do
justice to here, but to highlight key issues from objectives 2-4. Detailed findings are shown in the full
report (Smith and Ross 2004).
Methods
Literature reviews for each of the three clinical areas were undertaken consecutively between November
2003 and January 2004. Electronic databases (EMBASE, MEDLINE, PubMed, CINAHL, The British
Library Electronic Table of Contents database, The Institute of Scientific Information, The National
Research Findings Register, National Research Register and Cochrane Database) were searched online
using key search terms (Appendix 1) and inclusion criteria (publication date, topic area). Searching
focused on literature published in the last 10 years (since 1993) and databases used in the library search
covered materials relating to UK and European health services. Fields of the review included research,
policy, professional, and consumer literature. Papers in international journals but relating to UK health
services were included, this is important as UK-based research is frequently reported in international
journals. Hand searching of key journals and web-based searches were used to identify articles and
reports published by healthcare service providers, university departments and government agencies.
References for publications identified by the searches were entered into tables in Microsoft Word together
with information about aims/objectives, patient sample, tools/methods and findings.
The first stage of the analysis aimed to identify information of greatest relevance by targeting
publications relating to health service provision in the UK (see Appendix 2). We focused the analysis in
this way because the concepts we were exploring may have different meanings in other cultural and
health care contexts, and the review timeframe did not allow us to explore these factors. Each publication
was classified according to methodological criteria and weighted to illustrate the generalisability of the
evidence using a standardised research classification system (US DHHS 2005). We were aware that the
nature of the topic area is complex and difficult to study in a controlled way, and therefore it was unlikely
442
Appendices
that any systematic reviews or randomised controlled trials had been undertaken in this area of work. The
majority of studies were likely to be descriptive, to take into consideration important contextual issues.
The lead researcher (ES) read the publications and identified commonly occurring issues or topics to
identify themes by which to code and sort the data. The consistency of the analysis was independently
verified by a second researcher (FR) checking the methodological weighting awarded to a sample of
publications (approximately a quarter of the total number reviewed) and the application of theme
categories.
Our approach to presenting the information in the final report was to align the data within theme
categories according to stages for each pathway (e.g. access, pre operative assessment, surgery etc.). This
meant that it was firstly necessary to identify stages of the pathways by drawing on documented and
theoretical accounts of ICPs in the literature from NHS and independent sector services. The data was
then reordered to reflect the ‘typical' stages of each ICP. Three clinical expert reviewers commented on
the findings of each review and a member of a patient and public involvement group provided critical
comments about each set of findings.
Given more time, we would have sought to review the literature relating to health services outside of the
UK; include research on patients' wider views of the NHS or independent health care services; to drawn
on patient's experiences of other care pathways; and to undertake a more systematic search of the grey
literature e.g. doctoral studies, unpublished reports and web-based sources. A conceptual limitation is that
evidence of patient experiences in the literature might not be the same as patients' actual experiences
because they are interpreted and generalised. We chose to consider patient experience in a broad sense
and therefore included quality of life measures as an indication of patient experience of clinical outcome.
We acknowledge that these are by no means the same and have used this approach mainly to highlight
patient involvement in identifying improvements in postoperative quality of life or to better understand
the advantages for patients for particular models of service delivery. Patient satisfaction measures were
included but it is acknowledged that many means of measuring satisfaction do not show service users'
relative preferences for existing services or new models of care delivery. We did not obtain or test the
instruments identified by the review. It is difficult to produce conclusive evidence from a literature review
as summarising the results of individual studies means it is difficult to detect small intervention effects.
Particular difficulties were encountered because of heterogeneity in service provision, outcomes, and
context. The impact of these differences is so complex that combining results was often impossible or
inappropriate.
FINDINGS
A wealth of information was collected during the literature review about each of the three pathways of
health care provision and the patient groups receiving care within them. As our approach to analysis
aimed to identify evidence of greatest relevance, generalisability and utility the volume of literature
reviewed is relatively small (cataract review=28 publications; hip replacement=22; knee arthroscopy=13).
A much greater volume of literature (200+ references) informed the interpretation and discussion. The
type of publications reviewed tended to be accounts of small-scale research projects or descriptions of
practice/clinical development. What the literature reveals represents a valuable source of information
about the complexities of patient experience. Detailed findings tables are available in the final report
(Smith and Ross 2004). Here, we can only provide brief summaries of what is known about patient's
views of access, provision and follow-up healthcare in relation to these pathways and the methods and
instruments that have been used to gather them.
Cataract care review
The evidence base for patient experiences of cataract care services focuses on patient-based outcomes of
care, including vision related quality of life (Foster 2001) and satisfaction with visual function (Lowe et
al. 1991, 1992; Smith & Liu 2001; Javitt et al. 2000; Lundstrom et al. 2002; Wenzel & Altgassen 1996).
There is also evaluative evidence for service developments including; day case surgery (Davies & Tyres
1992; Lowe et al. 1991; Lowe et al. 1992; Percival & Setty 1992), one-stop services (Hughes et al. 2001)
and community outreach (Haynes et al. 2001). The evidence illustrates that positive patient experiences
can be linked to (i) clinical outcomes: minimal risk of complication, satisfaction with visual acuity and
443
Appendices
quality of life measures; (ii) convenience of: travelling to appointments, appointment time during the day
and length of time spent waiting for the appointment; (iii) professional service: thoroughness of the
examination, the amount of time spent with a professional, the general attitude of the professional, the
grade of the professional, the information and explanations provided. Satisfaction surveys show that
patients with cataract are generally satisfied about the treatment and care they receive in the UK (Haynes
et al. 2001; Hughes et al. 2001; Kerr & Kavanagh 2002; Lowe et al. 2001, 2002). However, there are well
reported disadvantages of using standardised satisfaction scores as these often reveal little about particular
sources of dissatisfaction. There is a clear deficit in the cataract service literature with regard to
incorporating patient experiences into the progressive development of services. There is very little
research literature about patient's experiences of support from cataract services or from voluntary support
groups.
Hip replacement review
The UK literature indicates that patients who have had hip replacement surgery are generally satisfied
about the treatment and care they receive (Dawson et al. 1996a, White & Dougall 2002). The literature
focuses on the development and validation of tools to assess patient outcomes or quality of life following
hip replacement surgery (Dawson et al. 2001; Dawson et al. 1996a; Fitzpatrick et al. 2000; Fitzpatrick et
al. 2003; McMurray et al. 2000; O'Boyle et al. 1992). There are a number of well-validated tools that
have been used pre and post operatively to assess patient's pain and functionality (e.g. Oxford Hip Score,
Dawson et al. 1996b). Existing health questionnaires offer a valid and practical means of monitoring
outcomes of hip replacement surgery. Patient's experiences of hip replacement care are less well known
in terms of patient's views on models of service delivery or management of care, although some work has
been undertaken in relation to post-operative rehabilitation (Heaton et al. 2000). The evidence shows that
that positive patient experiences of hip replacement care services can be linked to (i) clinical outcomes:
pain reduction, improvement in functionality, quality of life and social outcomes, improved emotional
and mental health outcomes; (ii) professional service: provision of information about surgical procedure,
recovery, problems and equipment; (iii) communication: before during and after hospitalization about
risk, concerns and precautions for long-term use of the hip, convenience of length of wait for operation,
length of stay in hospital.
Knee arthroscopy review
The age range of patients within the pathway and the different diagnoses that can be determined and
treated arthroscopically, means that the needs of patients are more diverse compared to some other
pathways. The literature on arthroscopy of the knee tends to focus on retrospective studies of clinical
outcomes using patient data in one or more hospital setting (Bernard et al. 1999; Hossain et al. 2001;
Iossifidis 1996). However, a few prospective studies have looked at patient outcomes in terms of
satisfaction with surgery or preference for day case procedures (Fitzpatrick et al. 1998; Kumar et al.
2001). These studies show that patients who have had knee arthroscopy are generally satisfied about the
treatment and care they receive. The use of validated tools has been largely used in the assessment of
patient's appropriateness for knee arthroscopy versus other treatment options (e.g. Magnetic Resonance
Imaging) and for day surgery procedures. There are a number of well-validated tools that have been used
preoperatively to assess patient's pain and functionality (Oxford Hip Score, Dawson et al. 1996b; and
New Zealand hip/knee Score, Hadorn & Holmes 1997). The evidence shows that that positive patient
experiences of knee arthroscopy care services can be linked to (i) clinical outcomes: management of
postoperative pain, improvement in functionality/movement, quality of life and social outcomes,
complication rate, (ii) professional service: provision of information about surgical procedure,
preparation for arthroscopy, recovery and discharge; communication before during and after
hospitalization about complications and alternative procedures (e.g. MRI), (iii) preference for: anaesthetic
administration/sedation, day case surgery compared to inpatient procedure. Patient's experiences of knee
arthroscopy care are less well known in terms of patient's views on models of service delivery or
management of care, professional communication or emotional experience. Relatively little work has
been undertaken in the area of patient experiences of post-operative rehabilitation.
444
Appendices
Discussion
Taken together the findings from literature review are wide reaching and relate to the use of patient
views and experiences within organisational structures, service development, methodological research,
professional education and training. For the purpose of this article, figure 1 provides a framework for
organising the main themes of the discussion. Looking across the findings as a whole it is possible to
draw together key points in relation to the concepts of patient focused ICPs, diversity, continuity,
information and support. We then identify some of the methodological issues for establishing the purpose
and value of patient experiences in different contexts and aspects of ICPs.
The literature shows that the reasons why patient views are gathered are generally described as for the
development and planning of services or for the improved operation and delivery of services. Patient
satisfaction is a recurrent concept but is problematic because of reasons discussed in the following
section. Less emphasis has been placed on involving patients to ensure confidence in health services,
understand patient expectations, shape service provider perspectives, influence priorities for health
services or to develop solutions. These are all target areas for creating a patient-led NHS (DH 2005) and
where service user involvement in ICPs could contribute.
The literature across all three pathways tends to report findings of small studies undertaken in one
clinical service or setting, most studies are not randomised or controlled. Patient experiences are being
predominantly collected within clinical settings at preoperative or outpatient appointments, or with
patients in their own homes, for example using telephone interviews or postal questionnaires. The
methods through which patients have been asked about their experiences include: involvement of service
users in project work, one-to-one interviews, focus groups, surveys, consultations, and representation on
internal groups. This reflects findings from a wider review of involving patients in the planning and
development of health care (Crawford et al. 2002).
More recently, patients have been asked about the accessibility and format of patient information. The
literature reveals few accounts of service organisations or project leaders providing feedback to patients
about the outcomes of consultation or deciding how they should be involved in the future. These findings
confirm previous research that has found that the NHS is, on the whole, improving at providing
information for patients and getting feedback from patients, but it is failing to ensure that patients, carers,
service users and the public influence decision-making (DH 2003).
Patient focused ICPs
A national review of ICPs identified a patient focused model as one of four models of care pathway
development (the other models focus on continuity, clinical effectiveness, cost/efficiency). The findings
of our review further develop the notion of patient focused ICP development. This is not to say that
elements of more than one model, or indeed all, might not feature in the development of any one ICP (De
Luc 2000). A patient focused model of ICP development might include identifying areas of patient
dissatisfaction with current models of provision, areas for improvement and service gaps. For example,
specific issues might include; assessing length of stay for procedures or the influence of discharge
practice on length of stay; the implementation of policies or the development of community support. Part
of this approach would be to gain patient's perceptions of the suitability of ICPs (and individual service
units) to provide individualised and patient centred care and to build understanding of the patient's role in
ensuring patient safety and reporting.
Health services tend to be influenced powerfully by adverse experiences, such as a patient or doctor
reporting a negative incident or through a complaints procedure (Allsop 1994). It is therefore likely that
this literature review identified what is possible or desirable. What actually happens in service settings is
more likely to be driven by service responses to patient safety incidents or individual experiences.
Because most procedures are safe, and because most people are satisfied with the outcomes of their care
or treatment, negative patient experiences tend to be underreported and carry little statistical weight in
patient satisfaction surveys (Crow et al. 2002). This might well lead to a form of publication bias and
complacency about risk or a ‘one size fits all' approach to an ICP. This supports previous suggestions that
445
Appendices
changes to services will stem more from the limited number of studies of complaints than the large
number of satisfaction surveys being carried out (Coyle and Williams 1999).
Diversity of patients within ICPs
The possibility that certain patient subgroups are neglected within ICPs has been identified as a possible
draw back to be overcome (Schmid and Conen 2000). Diversity is a key issue that warrants particular
attention both in terms of improving methods of service user involvement and developing ICPs that are
appropriate to diverse patient groups. However, diversity should be perceived with caution. For example,
large-scale research undertaken in the USA has shown that sociodemographic characteristics (age,
location, economic status, education, marital status, race, gender, health status and number of visits to a
healthcare service) appear to explain little (a combined predictive power of less than 1 percent) in the way
of a patient's evaluation of their care (Tucker and Adams 2001). Age and educational attainment have
been found to be associated with patient's reported satisfaction with care (Sitzia and Wood 1997), the
relationship with other characteristics is less consistent.
It appears to be more important to consider that different patient groups within an ICP may have different
health/illness trajectories, pain experiences and care and rehabilitation needs. These differences are likely
to vary according to whether an ICP defines a group of patients according to diagnostic, procedural,
symptom, patient need, high volume, high risk, or economic cost criteria (Ellis and Johnson 1999). For
example, in relation to knee arthroscopy (a procedural pathway grouping) consideration should be paid to
the difference between patients with degenerative diseases and those suffering from injury. Understanding
diversity in these terms may help to create individualised pathways of care. This supports the views of
others that ‘combining of individual interventions in a management framework suited to local needs and
abilities is the critical factor' (Bandolier 2003) and that the use of ICPs should act to identify rapidly
patients whose clinical course is unexpected and may therefore require additional special care (Campbell
et al. 1998). Similarly, communicating with different groups of patients about their wider service
expectations and needs is important for determining which elements of care are important to patients and
how these can be translated into appropriate measures of quality. Others have concluded that, at the
simplest level, qualitative research methods are the most appropriate means for establishing patient
priorities whilst surveys are more useful for monitoring service provision once priorities are known
(Batchelor et al. 1994).
Perspectives of continuity
The literature shows that it is reassuring for patients to see the same clinician in the operating theatre as
they saw in a preoperative clinic. Continuity of patient care between professionals (e.g. multi professional
team working) and continuity of a patient's treatment by the same professionals are important issues to be
addressed in the development of ICPs. These issues are part of a broader need to establish links between
organisational characteristics (e.g. staffing configuration, leadership) and service user-defined outcomes
of care. This is important because ICP development is increasingly turning to more complex medical
conditions and patients treated in the community (Grubnic 2003), where patients are more likely to be
receiving care from more than one provider. Ellis and Johnson (1999) believe there is a useful
educational component of ICPs whereby new staff, once they understand the ICP process, can see clearly
how patients should be cared for; this may lead to continuity in terms of the type of care being provided.
Information and patient support
Changes to the delivery of care necessitate a reconceptualisation of patient's information and support
needs to take into consideration patient/professional interactions across multiple service organisations.
Learning from patient experiences about how patients receive or access information will support the
delivery of more appropriate, relevant and timely information giving. Information giving is essential in
ensuring informed consent to treatment, medication and care (see for example DH 2001b). Generally,
ICPs are valued for minimising errors of omission and failure to provide information to patients (Ellis
1997). Previous research on providing patients undergoing hip arthoplasty with written information sheets
aimed to ascertain whether this is acceptable to patients and whether it improves recall of the consent
interview (Langdon 2002). Information sheets were shown to be beneficial to the process of informed
446
Appendices
consent and recall of information partially depends upon, but is not equivalent to, comprehension of
information (Williams et al. 1996). Yet, medico legal practice for obtaining informed consent (GMC
1998) does not recognise that some patients prefer to receive no information at all.
‘The provision of adequate information is an essential prerequisite to the development of trust. It

underpins the honesty between professional and patient' (The Bristol Royal Infirmary Inquiry 2001).
Although there is little evidence in the literature specifically relating to patients considering or
undergoing cataract, hip replacement or knee arthroscopy surgery, much can be drawn from the wider
literature on decision-making and patient centred care. Information should be given in a variety of
formats, including verbal and written and that this should be tailored to the individual patient.
Communication with patients can reveal simple steps such as showing patients the prosthesis in advance
of surgery or allowing them to touch models can put patients at ease and build trust.
A particular area of concern for the majority of patients is pain and it is known to be a complicating factor
in recovery after elective surgery (Pavlin et al. 2003). Clinicians have an important role to play in
enabling patients to talk about their fears about pain and their pain experiences preoperatively, during
surgery (e.g. during cataract operations using eye drop anaesthesia) and postoperatively (e.g. after
returning home following hip replacement surgery).
Methodological issues
The literature review highlights that there is a need for methodological development in order to better
understand patient experiences at the different stages of an ICP. Overcoming methodological issues of
patient satisfaction surveys (see Lin and Kelly 1995, or Batchelor et al. 1994); for example establishing
methods of identifying dissatisfaction (Coyle and Williams 1999), identifying areas for improvement and
gaps in provision in a positive way is a significant need because of the widespread use of these methods
(Avis et al. 1995). Others have previously shown that conceptualising satisfaction is problematic (Sitzia
and Wood 1997) and that satisfaction levels reveal little about what could be done to improve a service.
Coyle and Williams (1999) argue that the lack of conceptual clarity and inadequate theorisation are the
key problems facing patient satisfaction research and that the task of research is to develop a framework
for exploring dissatisfaction with healthcare in different contexts and to design conceptually sound
measures and guidelines for practitioners. This reflects the views of others that a patient satisfaction
survey can be a rich source of information for generating continuous quality improvements, but only if it
is used within a consistent framework (Lin and Kelly 1995).
There is a need to develop theoretically underpinned methods of integrating different sources of evidence
and information from different sources and to establish the feasibility of longitudinal qualitative
(descriptive) research about health service provision; for example understanding patient's experiences
through their journey of care or evaluating changes in ICPs over time. There is also a need to encompass
and develop concepts of variance and variance analysis. These terms are often used to describe processes
of modifying ICPs. The nature and response to any patient's deviation from the pathway is documented to
provide data on what care actually took place, compared to the care that was expected (for further detail
see Ellis and Johnson 1999). Some work has been undertaken in the USA to develop software
programmes to support continuous monitoring (Swinehart and Smith 2004). However, developing
innovative research methods for collecting information about patient experiences at all stages of an ICP,
taking into consideration patient's views and experiences may not fit within this service-constructed
framework.
The findings strengthen previously raised concerns about reducing the data collection demands placed on
patients (Lin and Kelly 1995), managing the amount of information that can be generated, deciding what
should be recorded and how this will be categorised and analysed (Bragato and Jacobs 2003). There are
issues about the timing of gaining information from patients and the methods through which patient views
can be integrated e.g. using Internet based discussion boards or consensus group methods. It is important
to establish opportunities for service users to express their opinions, and ways for service providers to
interpret these, rather than predetermining which questions to ask. There is also a need to identify who are
the best people or partnerships to undertake such activities and associated issues for staff training and
development, which it has not been possible to discuss within the limitations of this article.
447
Appendices
Conclusions
The literature identified by the review contains important messages for both NHS policy and future
research to involve service users in the planned expansion and plurality of NHS care. Current available
information shows that patients who experience cataract surgery, hip replacement or knee arthroscopy in
the UK are generally satisfied about the treatment and care they receive. However, these views have
largely been gained through small-scale evaluations in the NHS acute sector. Patient concerns and
experiences might relate to issues throughout the whole pathway of health care provision, or wider health
issues such as information giving, communication and support. Particular consideration needs to be paid
to the balance between eliciting patient experiences of individual service units and patients overall
experiences of an ICP and broader health experiences. This is particularly relevant at the present time in
the UK given the recent quality debates about the provision of independent services to the NHS. There
are also implications for the choice agenda in the NHS and the notion of a patient-led NHS: such as
questions of who defines what choice should look like and what the purpose of choice is, or should be, in
different service settings.
The findings also contribute to debates about the use of different methodological approaches for the
collection of patient views, how best different types of information can be interpreted and synthesized and
specifically how patient and public views can be integrated into the development of ICPs. This review
extends knowledge and understanding but there are still considerable gaps that further investigation could
address. Development of models, methods and techniques for involving service users will help to
communicate wider service expectations and needs to determine which direct measures of quality should
be used. Integrating patient experiences into service development might be perceived as a small step
towards achieving a patient-led service but the evidence suggests that quality outcomes can be achieved
when service users' views are heard and acted upon.
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Tucker III, J. and Adams S. (2001) Incorporating patients' assessments of satisfaction and quality: an integrative
model of patients' evaluations of their care. Managing Service Quality, 11, 4, pp.272-286.
US DHHS (United States Department of Health and Human Services) (2005) Agency for Health Care Policy and
Research Evidence Report/Technology Assessment: Number 47, Systems to Rate the Strength of Scientific
Evidence.
Wenzel, M. and Altgassen, G. (1996) Satisfaction of cataract patients. Klinishe Monatsblätter für Augenheilkde, 209,
4, pp.215-9.
White, T. and Dougall, T. (2002) Arthroplasty of the hip. The Journal of Bone and Joint Surgery, 84-B, 3, pp.335-
338.
Williams A, Johal P, Bentley G. (1996) Obtaining preoperative consent for surgery – a survey of current practice.
British Orthopaedic Association. The Journal of Bone and Joint Surgery – British Volume: The Journal
Proceedings.
Wilson, J. (1997) Integrated Care Management: The Path to Success? Butterworth/Heinemann, Oxford.
Acknowledgements
The literature review was funded by the Commission for Healthcare Improvement (now the Healthcare
Commission). We would like to acknowledge the contributions of Jennifer Attride-Stirling (Development
Manager, Policy and Development Directorate CHI); Joy Dale, Patient Partnership Group, Royal College
of General Practitioners; Fiona Davies, Director of the National Joint Registry; Professor Sally Redfern
and Barbara Davey, Nursing Research Unit, King's College London; Dr Simon Kelly, Royal College of
Ophthalmologists; Dr Richard Smith, Royal College of Ophthalmologists; Mr Hugh Phillips, Vice-
President, The Royal College of Surgeons of England; Carole Jackson, King's College London. We
would like to acknowledge the anonymous reviewer of this article for their comments.
451
Appendices
Figure 1: Developing service user involvement in integrated care pathways
Consideration should be paid

There is a need for future work to focus on Communicating with service
to the balance between
establishing the purpose and value of users about their wider
eliciting patient experiences
gaining patient experiences and to develop service expectations and
of individual service units and
appropriate, robust and ethical methods needs is important for
patient's overall experiences
for achieving these aims for different determining which elements
of care pathways. Patient
aspects of ICP development of care are likely to be
information and support are
important to patients and
two such aspects of care that
establishing how these can be
are central to the whole
translated into appropriate
pathway and warrant further
measures of quality
investigation
Purpose
Further attention
Further
needs to be paid to
Balance Expectation investigation of
the methods of Development of & Needs diversity is
integrating patient care pathways necessary to inform
experiences into needs to be the development of
service development flexible to support individualised
and making use of individual patient's pathways of care. It
existing patient data needs yet is important to
and variance tracking structured to consider that
information. Use of maximise efficacy different groups may
newer methods such as Methods and outcomes have different
Diversity
consensus groups and health/illness
the use of the Internet trajectories, pain
should be evaluated in experiences and care
this context. There is a and rehabilitation
Skills &
need for research into needs. The influence
methodological issues Support of sociodemographic
such as the effect of characteristics on
timing of surveys and patients' expectations
measures of relative and
preference for
different patients Consideration should be paid to which people or partnerships experiences of care
have the appropriate skills to develop and validate ‘service- are unclear
specific' tools, particularly for the assessment of new services, and
how partnerships can be developed to support these activities.
Ways of enabling service providers to achieve this goal through
supporting capacity development need to be determined.
452
Appendices
Appendix 2: Key search terms
Cataract literature review
Cataract + Patient experience

Cataract + Patient views
Cataract Care
*Patient experience
*Cataract
Hip replacement literature review
Hip replacement + Patient

Hip replacement + Patient experience
Hip replacement + Patient views
Patient experience
*Hip replacement
Knee arthroscopy literature review
Knee arthroscopy + Patient experience

Knee arthroscopy + Patient views
Knee arthroscopy
*Patient experience
*Arthroscopy
*Due to the high number of articles returned for these key words they were only used for databases
which returned no other references using the proceeding combinations of key words. Index terms for
databases were used where available.
453
Appendices
Figure 2: Process of literature analysis
Relevance(1) – does the publication relate to the topic

of the review?
Literature relating to three review pathways in UK health settings

Literature relating to
care in other European
health settings
Depth(1) – is it a broadly competent attempt at

research, enquiry or investigation?
Methodological classification (2)

Ia Evidence obtained from meta-analysis of randomized Opinion based
controlled trials. UK literature
Ib Evidence obtained from at least one randomized control trial.
IIa Evidence obtained from at least one well-designed
controlled study without randomization.
IIb Evidence obtained from at least one other type of well- designed
quasi-experimental study.
III Evidence obtained from well-designed non-experimental
descriptive studies, such as comparative studies, correlation
studies or case studies.
IV Evidence obtained from expert committee reports or
opinions and/or clinical experts of respected authorities.
Supporting
evidence
Utility(1) – will it help to answer the objectives of the

review?
Data structured according to themes for patient centred care

developed from guidance for each care pathway (3)
Secondary thematic analysis drawing together key points

from three reviews
Notes:
(1) Relevance classification: modified from Greenalgh T, Robert G, Bate P, Kyriakidou O, Macfarlane F and
Peacock R. (2003) A systematic review of the literature on diffusion, dissemination and sustainability of
innovations in service delivery and organisation. Commissioned by the National Coordinating Centre for
Service Delivery and Organisation.
(2) Methodological classification: after United States Department of Health and Human Services. Agency for
Health Care Policy and Research. Evidence Report/Technology Assessment: Number 47 Systems to Rate the
Strength of Scientific Evidence .
(3) Utility criteria: drawing from principles for patient centred care in relation to each care pathway e.g. patients
concerns, and need for information, seeking an integrated understanding of the patients' world , finding
common ground on what the problem is and agree management, enhance prevention and health promotion,
enhance the continuing relationship with the patient. (see Stewart M. Towards a global definition of patient
454

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Chapter 7: Ways forward

7.2 Framework for an evidence base

A growing number of individuals, teams and organisations are working towards

The organisation InvoNET (supported by INVOLVE and Worthing and Southlands

{Trigger (App3/Date:07.03.06): Launch meeting of InvoNET}

- Hierarchies of scientific evidence do not support user involvement-

{Trigger (App3/Date:21.02.08): InvoNET seminar}

Figure 30: Framework for an evidence base

Context emerges as an important issue for building knowledge of user involvement.

In the discussion at InvoNET, concerns about showing evidence of impact were

{Trigger (App3/Date:21.02.08): InvoNET seminar}

{Trigger (App3/Date:21.02.08): InvoNET seminar}

Drawbacks Issues Benefits

• New forms of vulnerability, • Information about health

• Meeting requirements for

• Research that meets

7.3 Reasons for resistance

{Trigger (App3/Date:21.10.05): Discussion group with Australia healthcare

Issues of researcher resistance to user involvement are certainly intertwined with

{Trigger (App3/Date:04.10.06): Presentation on user involvement in stroke

Controlled Trials had shown that user involvement was beneficial to

It may be that politically-driven requirements for user involvement imbue immediate

{Trigger (App3/Date:23.08.04): “Learning from the patient experience”

isomorphism” can operate through collective rationalization of established systems and

Resistance towards user involvement in health research can also be perceived in a

simply attributable to the domination of organisational or professional power over

In this study, visiting Australia provided an opportunity to look at how assessment

7.4 Spaces for manoeuvre

Given that resistance can be a positive force in developing knowledge of user

In other research contexts a dynamic approach to methods of user involvement offers

There is an important and related issue about the implications of developing

{Trigger (App3/Date:21.02.08): InvoNET seminar}

{Trigger (App3/Date:19.10.05): Discussion group with Australian healthcare

Subjective experiences and views

Figure 32: Opportunities for knowledge development

Commitment ↔ Control Rationales Dynamic

Equal say ↔ Know how

Avenues for knowledge development

• Pre-existing views and values

7.5 Experiences of power

{Trigger (App3/Date:21.09.06): ‘An informal conversation about user

Figure 33: Ability to deliberate

“the presence of user involvement at any level requires adaptation on the

Alternative meanings of user involvement in health research occur because practice is

And by service user researchers:

And by me during this study:

{Trigger (App3/Date:19.10.05): Interview with a senior academic in Australia

{Trigger (App3/Date:20.10.05): Interview with a senior academic (Participant 8)}

In another interview I undertook, with a senior academic, the participant began by

{Trigger (App3/Date:21.02.08): InvoNET seminar}

{Trigger (App3/Date:07.10.06): INVOLVE Conference ‘People in Research’}

{Trigger (App3/Date:07.03.06): Launch meeting of InvoNET}

In this chapter I am arguing that understandings of user involvement in health research

conduct and everyday practices. Subordination and superordination can become

{Trigger (App3/Date:03.08.06): Supervision, discussion of rejection of ethics

“Research is about people and power. You have to be really active to do

7.6 Judgement making

At least four types of judgement could be further explored in relation to user

Pre-existing views and values

Figure 34: Orientations of intent

Alignment with society through

What should we do? What should society do? How

Pre-existing views and values