Should a patient
be called a patient?
Should a patient be called
a patient?
A discussion held on Patients’ Page, Linkedin
Introduction
In May 2010 Stephen McMahon,
CEO of the Dublin-based Irish
Patients’ Association (IPA) and
Council Member at the Irish
Council of Bioethics started a
discussion in the Linkedin site
Patients’ Page about whether a
patient should be called a patient or
consumer:
“Some institutions would prefer
to popularise the term ‘consumer.’
My concern is that if we lose the
title ‘patient’, then, in the public’s
eye, a healthcare ‘consumer’ would
not be much different to any other
‘consumer’ in the economy. The
term ‘patient’, however, has an
identity with which most in society
can identify. Do you agree?”
In the following five months
25 people from different walks
of life offered opinions to the
discussion [see feature box] not
only commenting on the merits
of the word patient/consumer, but
suggesting alternatives as well. This
article analyses those discussions
and Stephen’s summary of the
findings.
Source of discussion: http://linkd.
in/ecAvtX
© PatientView 2010
The participants of the discussion
Kathi Apostolidis, cancer patient
advocate, Greece.
Angeles Barrios, Spanish-based
Director of Communications and
Public Relations, Philips Iberia.
Jim Blaha, Fort Walton Beach,
Florida-based Principal, BHC/JJB.
Danièle Castle, Swiss-based Advisory
Board Member, Dare to Glow.
Julie Curphey, UK-based Head,
Customer Intelligence (Primary-Care
Australia, Canada, Europe, and New
Zealand), Pfizer, and Chairperson,
the British Healthcare Business
Intelligence Association (BHBIA).
Laetitia Defaye, Swiss-based
information and communication at
OM Pharma (Galenica Group).
Jan Geissler, Cancer patient
advocate, Germany.
Chris Godwin, UK-based partner at
Science, Technology and Innovation
Partners LLP.
Andrew F. Hartnett, US-based
human performance strategist.
Geoffrey Henning, UK-based Public
Affairs Manager, Roche Products.
Hugues Joublin, US-based Vice
President and Global Head,
Oncology Affairs, Novartis Oncology.
Stephen McMahon, CEO of Irish
Patients’ Association (IPA) and
Council Member at the Irish Council
of Bioethics—initiator of the
‘patient’-‘consumer’ discussion.
Ron Marsh, Edinburgh-based
independent market research
professional and patient advocate.
Frank Mulcahy, Ireland-based
independent non-profit organisation
management professional.
Kathy Oliver, UK-based Co-
Director, International Brain
Tumour Alliance (IBTA).
Lynn Plant, UK-based Managing
Director, Motif 8 Ltd.
Sandi Pniauskas, Canadian-
based independent ovarian cancer
volunteer.
Lisa Pohmajevich, US-based
Marketing Strategist, Master Class
Products.
Alexander Roediger, Swiss-based
Director, European Union Affairs,
MSD (Europe), Inc.
Enrique ‘Topo’ Rodriguez,
Australian-based CEO, the Topo
Foundation for Education (TF4E).
Emilio Roldán, Argentina-
based President, the Sociedad
LAtinoamericana De Invest
Medicas en Enfermedades Raras
(SLADIMER), and Director
Científico, Gador S.A.
Cheryl-Anne Simoneau, Canadian-
based President, the Chronic
Myelogenous Leukemia (CML)
Society of Canada.
Paul Trehin, French-based early
retiree from IBM.
Mira de Vries, Dutch-based
Director, Association for Medical
and Therapeutic Self-Determination
(MeTZelf).
Alex Wyke, CEO of UK-based
PatientView.
18

‘Patient’ is the
appropriate
term
because…
[6 comments]
l Only the term ‘patient’ can reflect
the unique quality of healthcare as
a service [Ron Marsh].
l A ‘patient’ lacks the freedom of a
‘consumer’ to switch services [Paul
Trehin].
l ‘Patient’ is the established term
(though others can be valid in
certain ways) [Jan Geissler].
l Only the term ‘patient’ can
emphasise the healthcare element
of the service received [Danièle
Castle].
l ‘Patient’ is the term acceptable to
certain national populations [Kathi
Apostolidis].
“Over 15 years ago, as an inpatient, I
had frequent chats with a nightshift
hospital cleaner. She was concerned
about what she perceived as
degradation of service—specifically,
the instruction given to refer to
‘patients’ as ‘customers’.
Anyone of my vintage will know
that ‘the customer is always right’, but
this terminology has been modified by
marketing people for the benefit of
sellers.
Healthcare, particularly in the
UK’s National Health Service (NHS),
is a unique service, not at all like
commercial undertakings. So, too,
is the ‘patient’ unique—the term
identifies a person with fundamental
needs, quite different to other
requirements. So, we should retain this
special title.”
Ron Marsh
“The main difference between a
‘patient’ and a ‘consumer’ is that
the latter can easily change store or
© PatientView 2010
supplier of service, while a patient is
dependent upon specific treatments.
That dependence includes the
specific competences of healthcare
staff—competences which may not
be available at a nearby healthcare
facility. In addition, the staff have
gained an in-depth knowledge of the
patient’s case—which would takes
days or weeks for another healthcare
establishment to acquire. I just had a
stroke, and the team that saw me has
an intimate knowledge of my health
condition. Do I have the choice to go
to another health service? That would
mean at least a full week’s work by
the new staff in understanding my
case (which is rather complex, since
the stroke is likely to be caused by
a metastasis coming from a kidney
tumour I had last year). All the details
are fully understood by the team
that cares for me at present. Would I
behave now as a ‘consumer’, and move
to another team, just because the other
team might be less expensive? Would
you do it yourself?
Hence, a ‘patient’ has no possibility
of changing health services—unlike
a ‘consumer’, who can decide to
switch store or merchant without
much difficulty, if unhappy with the
products or services received.
The same argument is applicable
for other, less medically-directed
services, such as services for older
people. Can competition between
services be efficient, when one
knows how much older people can
be dependent on habits, and on the
relationships established with existing
service staff? It is unlikely that older
people will consider themselves
‘consumers’ of services, and be ready
to move to another service as easily as
to another supermarket, just on the
basis of lower cost, or the offer of new
services.
In view of that argument, ‘patients’
cannot be assumed to be ‘consumers’.
That goes also for services for older
people, people with a disability, and
people with long-term conditions.
The position is defended in Europe
by several patient organisations
and organisations for people with
Should a patient
be called a patient?
a disability, as well as older people’s
organisations. On the other side
are pressure groups that would
like to push all services towards a
fierce market freedom, in particular,
through the European Commission’s
Directorate-Generals for Competition
and for Internal Market and Services.
Fortunately, the Directorate-General
for Employment, Social Affairs and
Equal Opportunities is conscious of
the problems that can be faced by
services to highly-dependent people,
be they patients or older people. I
have the privilege to work in a large
civil-society organisation which
is in constant relations with the
European Commission, scrutinising
the Commission’s legal texts to try
to influence them for the protection
of the rights of the most vulnerable
members of the European population.”
Paul Trehin
“I think we need to respect that words
are differently used across languages.
What people speaking English might
understand as ‘consumer’ would
never be used in the same way in
Germany—a ‘Konsument’ (consumer)
is definitely not someone receiving
prescription medicines.
I am wary about using the word
‘consumer’ in health policy. The
reason is less semantics, and more
that there are established terms in
health policy. ‘Consumer groups’
have been around for many years,
and they are involved in representing
payers, patients, consumers and the
healthy population that do not yet
‘consume’ healthcare. ‘Patient groups’
have focused solely on supporting and
representing people who have become
patients, and who now have needs
associated with their condition.
My impression is that the word
‘consumer’ is often confused between
all these groups, and I think that we
need to be more distinct—whether
we talk about ‘patients’ (people with
a disease that is being addressed),
‘consumers’ (who receive and
consume goods), and ‘payers’ (those
who pay the bill for services used), etc.
19

Even if a diabetes ‘patient’, say, does
not want to be called ‘patient’, in the
healthcare sense, that person is more
a ‘patient’ than a ‘consumer’. (Just my
two cents’ worth.)”
Jan Geissler
“Having commented here earlier, and
then after discussions with others over
the past week, I’ll stick with using the
descriptor ‘patient’. I accept that it may
have undesired connotations, but,
overall, it has a uniqueness unavailable
in other terms.
‘Consumer’ in marketing terms
uses a product or service, and the
‘customer’ buys the product or service.
Neither of these adequately describes
the ‘patient’.”
So, quoting marketing definitions
of ‘customer’ and ‘consumer’, I suggest
that ‘patient’ is my choice due to the
term’s uniqueness.”
Ron Marsh
“This discussion thread reminds me
of a conversation I had yesterday
with the son of a man with a form
of Parkinson’s that severely impairs
his brain. When the son talked to
the physicians, they commented on
how attitudes towards ‘patients’ being
‘consumers’ has brought in a strong
element of liability and insurance
into medicine, with doctors making
decisions based on what they risk,
rather than on what is best for the
‘patient’. If that is being a ‘consumer’,
I am not at all convinced that this
is the right way for health to go.
‘Patient’, for me, implies a right to
caring (emotional, physical, medical,
and psychological), something which
the word ‘consumer’ does not—for
me, ‘consumer’ implies a commercial
transaction. Yet, part of the act of
healing comes from the care. So, I
agree with Ron Marsh. I would prefer
to be described as a ‘patient’, which
recognises that I have a health matter
to solve, rather than as a ‘consumer’,
which implies that I can be part of a
Kleenex culture that buys and throws
away things without pausing to think
of the value.”
Danièle Castle
© PatientView 2010
“Kathy Oliver, you touch a delicate
point. Indeed, in the majority of
European countries, the word
‘survivor’ has a negative connotation,
and is not welcome. Cancer ‘patients’,
when free of disease, still prefer to
refer to themselves as cancer ‘patients’,
rather than ‘survivors’. In Greek, it is
almost unacceptable to call someone
a cancer ‘survivor’. We prefer to be
identified as ‘people who have had a
cancer experience’, or simply cancer
‘patients’.”
Kathi Apostolidis
Should a patient
be called a patient?
‘Consumer’
is the
appropriate
term
because…
[2 comments]
l A ‘consumer’ is active, and has the
power of decision, unlike the more
passive ‘patient’ [Emilio Roldán].
l People can choose whether to
take medicines; they are therefore
‘consumers’ of those products
[Julie Curphey].
“Allow me to introduce a different
view from my experience with rare-
disease patient organisations. Not
being a ‘consumer’ in health is perhaps
the most unequal condition for a
person affected by ill health. If there is
no power of consumption, there are
no specific diagnostics; no therapies
available and/or affordable; no doctors
with knowledge of your condition;
no specific regulations or laws; no
reimbursements from social security
systems—no information at all. Not
being a ‘consumer’ in health leaves
you in an orphan situation, no matter
how wealthy you can be (indeed,
rare diseases are also called orphan
diseases). And most of the efforts of
NGOs are based on strategies to be
recognised as a potential ‘consumer’,
under different market conditions.
The advantage of being seen as a
‘consumer’, in this material world,
is that you become a player in the
scenario, an individual with power
of decision (and can ask: do we
want innovative expensive drugs,
even if the final outcome is not
significant? Or do we want vintage
drugs with proven efficiency?). As a
‘patient’, the role looks passive; as a
‘consumer’, it becomes active. Health
is mostly an industry, and the word
‘consumer’ plays strongly in the mind
20

of industrial people, politicians, and
people in general. We ‘consume’ food,
clothes, entertainment, and also
medicines. There is nothing wrong
with the word, and it helps to bring
benefits.”
Emilio Roldán
“If you ask people what they want to
be ‘classified’ as, it is not as ‘patients’.
People do not want to be labelled by
their disease/condition. They have
choice—to take medications, or not.
They are ‘consumers’ of medicines. I’m
in favour of ‘consumer’.”
Julie Curphey
A few possible alternatives to the word ‘patient’
Advocate (in health).
Citizen (with a medical condition).
Client (requiring services of the healthcare system).
Consumer.
Customer.
Partner (in healthcare).
Patient.
Person living with a medical condition.
Person with a medical condition.
Stakeholder / primary stakeholder (in health /
healthcare).
Survivor.
Thriver.
User (of healthcare services) / ex-user.
© PatientView 2010
‘Stakeholder’/
‘principal
stakeholder’
is the
appropriate
term
because…
[5 comments]
l ‘Patients’ are the sole stakeholders
in their disease, and only the term
‘stakeholder’ is wide-ranging
enough to overcome the apparent
impasse between the terms ‘patient’
and ‘consumer’ [Cheryl-Anne
Simoneau].
“This is an interesting discussion
thread. Recently, I started thinking
of ‘patients’ as ‘consumers’, as I am
experimenting with the idea of
certain terminology evoking a certain
mind set. My concern is that the
word ‘patient’ feels disempowering
at times. I guess it is the connotation
that, as a ‘patient’, you access services
and treatments after consulting
with experts in your specific disease
category—and then, essentially, you
do what they recommend.
From my perspective, this
description does not leave much
room for ‘patients’ to be pro active,
to carefully consider their options,
then make choices based on what
they feel is right for them (being
guided, of course, by their physicians).
‘Patients’ do have choices in most
circumstances, when their illness is
manageable, and treatment options
are many. Admittedly, this is not the
case when one suffers a catastrophic
event that requires emergency medical
treatment.
However, to be a true ‘consumer’,
one has to be educated enough
about the disease/illness to be
Should a patient
be called a patient?
confident enough to communicate
thoughts, objections, or questions
to the proposed treatment plan. The
person who is affected by the illness
(carefully not using the word ‘patient’
or ‘consumer’ here) needs to have
the right amount of confidence to
ask the right questions that allow a
deeper conversation that may turn
up significant information that could
change the recommended approach.
As Sandi Pniauskas wrote, we
are not ‘one size fits all’. ‘Patients’
are ‘consuming’ goods and services
generated and produced by the
healthcare system and industry. In
the US, pharmaceutical companies
are allowed to do direct-to-consumer
(DTC) advertising. However, ‘patients’
are not happy, willing ‘consumers’—
they did not go disease shopping
because they thought a certain drug
was sexy, and they just had to have it.
‘Patients’ come in all sizes and
varieties (after all, certain diseases are
non-discriminatory). Many people
are overwhelmed by their illness, and
pass all decisions about their care to
their physician, doing and following
whatever the physician suggests.
Others want to be engaged; they want
to know all the why’s and wherefores.
Then some ‘patients’ go one step
beyond, and actually want to call the
shots (after carefully considering the
options and choices). Interestingly,
‘patients’ in this category sometimes
refer to their physician as a consultant.
‘Consumer-patients’ are in the two last
categories; ‘patient-patients’ are in the
first category.
What we usually find in patient
organisations is that most of the active
‘patients’ are also the ‘patients’ in the
last two categories.
From my perspective, ‘patients’
are the ONLY stakeholders in their
disease. As such, they should be
represented at the table in all processes
that affect disease management. So,
maybe they are not ‘patients’, nor are
they ‘consumers’, but maybe they are
the ‘principal stakeholders’.”
Cheryl-Anne Simoneau
21

“I think that this discussion is very
relevant, as at least it can help us
define where, and what, direction
we would like to see ourselves going
towards with regards to improving the
current situation for ‘patients’.
While I cannot really comment
on what it must be like to access
services and drugs in the healthcare
systems in Europe, I can say what
it is like here in Canada, living next
door to the US. Canada has seen the
emergence of a ‘two-tier’ system:
publicly-funded versus private. This
allows some ‘patients’ to go ‘shopping’
for some services in a private setting,
where they pay for everything, and
access important diagnostics and
procedures much more quickly than
those in the publicly-funded system.
The perfect example is the MRI
Centre in Montreal [http://www.
villemariemri.com]. Sometimes, there
are more clinical trials in the US than
in Canada, and, depending on the
case, the government may support a
‘patient’ to access the trials in the US.
So, to a limited extent, I would say that
‘patients’ here in Canada do have some
choices and options, but we need to
improve on this.
Jan Geissler, doesn’t the slogan
on the European Cancer Patient
Coalition (ECPC) site, “Nothing
About Us, Without Us”, also imply
that the ‘patient’ needs to be
specifically engaged, educated, and
to this point, empowered in order
to comprehend and sit at the same
table? In my opinion, it also means
that not only do we want to know,
but we want to make sure that we can
be involved, and our opinions can
be more than just considered when
making decisions. In other words, the
‘patients’ as the only ‘stakeholders’
should be integrally involved in
the decision-making process. Not
only are we paying taxes to the
system, we are accessing the system.
‘Stakeholders’ represents people who
are going to be the most affected by
the decisions or actions of another
group, government or corporation.
Recently, we hear that, in healthcare,
there are many ‘stakeholders’—but I
© PatientView 2010
say that this is a fallacy. There is only
one ‘stakeholder’—that is the ‘patients’.
If there are no ‘patients’, then there is
no business/reason/purpose. We’ve
had this discussion at a very high level
here in Canada, and, actually, it is very
high-level physicians who feel more
strongly about this then even some
‘patients’. At this time, throwing our
arms up in the air—thinking that we
can do nothing about changing the
process/system—is not an option.
We must accept our role as agents of
change, and take a leadership role. As I
have said, this is an interesting thread.”
Cheryl-Anne Simoneau
“Yes, exactly right: “throwing our
arms up in the air—thinking that we
can do nothing about changing the
process/system—is not an option.
We must accept our role as agents of
change, and take a leadership role.”
Thank you, Cheryl-Anne Simoneau.
The UK provision of health services
seems to me bedevilled by a lack of
the sort of vision and determination
that Cheryl-Anne articulates. Instead,
we have learned or rationalised
helplessness, and expensive poor
standards [as recently: http://www.
topnews.in/norway-and-sweden-
have-better-lung-cancer-survival-
britain-2260215]. No one is suggesting
miracles, just the gumption to apply
proven best practice from next-door
countries.”
Chris Godwin
“Sandi Pniauskas, I think that finding
the appropriate way of defining
ourselves is integrally important
to the entire issue. This is the road
map of where we want to go. We are
only limited by our own thinking,
our own mindset. We ‘patients’ are
the only ‘stakeholders’, and it is our
duty to remind government and
corporations who it is that they
serve. No stakeholders?—then no
business, no government. This is not a
discussion about semantics or nouns
and verbs. If we do not know who
we are, and what we are, how can we
Should a patient
be called a patient?
possibly know what and where we
are going—or, importantly, where we
ought to be going? ‘Patients’ are not
‘patients’; they are not ‘consumers’;
they are the ‘stakeholders’. It is our tax
dollars going to our governments. We
empower government; we had better
keep an eye on how tax dollars are
being spent, and we had better make
sure that government remembers who
they serve. I am not for privatisation
of healthcare services, as long as the
government continues to serve us, the
people, and not just the corporations.
I am thinking specifically about
research, in this case. The more my
healthcare dollars are put to higher-
cost drugs, the less money stays in
the public system for independently-
funded research—which is vital.
Most of the greatest innovations in
healthcare today started in publicly-
funded, government-sponsored
institutions; corporations finalise
them, and bring them to market.
This is a critical situation for us all.
We, the ‘stakeholders’, need to accept
responsibility.”
Cheryl-Anne Simoneau
“Brilliantly to the point, Cheryl-
Anne Simoneau: “We empower
government; we had better keep an
eye on how tax dollars are being
spent, and we had better make
sure that government remembers
who they serve”. Precisely. What
provokes continuous improvement
in organisations that care to use it is
‘customer’ feedback—such as stopping
buying things, or pointing out issues.
Public-service provision needs to
implement their own processes for
gaining and learning from feedback
(and, also, not to whitewash mistakes,
and ignore or denigrate sources of
critical feedback).”
Chris Godwin
22

‘User’ (of
healthcare
services) is the
appropriate
term
because…
[5 comments]
l The term ‘user’ has grown in
favour in Greece as an alternative
to the term ‘consumer’ [Kathi
Apostolidis].
l The term ‘user’ has grown in favour
in the UK’s National Health Service
(NHS) [Alex Wyke].
l ‘User’ embraces a wide range of the
population [Kathi Apostolidis].
l ‘User of healthcare services’ is
even more appropriate than
‘user’, because it lacks derogatory
connotations [Kathi Apostolidis].
“Thanks to all taking part in this
discussion, which, for me, is timely,
since I faced this terminology problem
while writing a new website of
patients’ rights for one of the patient
organisations to which I belong.
The Greek Constitution speaks of
the obligation of the Greek state to
provide its ‘citizens’ with healthcare
services. Some 40-50 years ago, all
‘citizens’ in Greece lived within the
legal meaning of the term. Is the term
‘citizen’ appropriate today, though?
Does it refer to the near, or more than,
a million legalised or ‘illegal’ migrants
living (temporarily or permanently)
in Greece, or in any other European
country?
Does the term ‘patient’ refer to
people who are sick or being treated
now, to chronically-ill people, to
those who occasionally visit a doctor
(such as young people)? The term
‘consumer’—although the rationale
behind it might be considered
well established—is culturally
© PatientView 2010
Should a patient
be called a patient?
outside Greek mentality. No Greeks ‘users of healthcare services’ when
see themselves as ‘consumers’ of we want to include the underserved
healthcare services—for the good segments of population, I was looked
reasons that Paul Trehin explained in at with astonishment. So, when
his comments. referring to health, one should use
So, we have agreed to employ the the full phrase in Greek, ‘users of
term ‘users of healthcare services’ healthcare services’, as the plain word
when referring to anyone residing in ‘users’ might refer to another category
Greece (be they a ‘citizen’, a ‘patient’, of people.”
a migrant, a tourist, a visitor, etc), Kathi Apostolidis
using occasionally, or for any length of
time, or for more lengthy periods, any
healthcare service, public or private,
available in Greece. I note here that
even the term ‘users’ seems strange to
many Greeks, and they prefer the term
‘patients’ instead.”
Kathi Apostolidis
“I just got a message from Verity
Collins about jargon used by the
UK’s National Health Service (NHS).
Apparently, the NHS now calls
‘patients’ ‘service users’.”
Alex Wyke
“Alex Wyke, I will add that ‘user’ is
wider, since it includes also other
population groups that are citizens,
such as migrants, tourists, etc.
Therefore, the NHS correctly uses the
term ‘user’.
If a more general term is to
be used, there is agreement on
‘user of healthcare services’, which
encompasses people who have
experienced a disease, and healthy
people who don’t currently use
healthcare services, but who may
potentially use them in the future.”
Kathi Apostolidis
“It occurs to me the term ‘user’ could
be derogatory—if insults someone,
and calls them a ‘user’, the term
implies that the person is taking.”
Alex Wyke
“Since you touched on the point, drug
addicts are referred to as ‘users’ in
the Greek language. So, when I tried
to explain why we should talk about
23

‘Customer’
is the
appropriate
term
because…
[4 comments]
FOR
l A customer’ in a healthcare setting
is a more empowered individual
than either a ‘patient’ or a
‘consumer’ [Chris Godwin].
l The notion of a ‘customer’ forces
healthcare providers to increase the
quality of their services [Geoffrey
Henning].
AGAINST
l A ‘customer’ and a ‘consumer’
exercise free choice of services; free
choice is unavailable in healthcare
at the moment [Jan Geissler].
“I suggest that neither ‘patient’ nor
‘consumer’ is as good as ‘customer’.
Both of the first two terms imply a
less-empowered role for the end user
of the service. ‘Customer’ implies a
direct link to the process of bringing
money to the healthcare practitioner.
The superior service I experience
when I ‘go private’, compared with
going to the UK’s National Health
Service (NHS), is directly attributable
to my bringing money. I also think
that a more explicit ‘customer’
relationship would empower frontline
NHS workers, and reduce the mindless
box-ticking and excessive trying to
fulfil targets that comes down on
them from above. It would invert the
hierarchy appropriately, and put the
‘customer’ on top—then the frontline
health practitioner, then the admin
staff (supporting the practitioner,
rather than focusing on some even
more remote ‘suit’). My experience
of primary care in Germany, where
everyone takes a new health-fund
© PatientView 2010
voucher to their general practitioner
(GP) every quarter, is that this
reminds the GP where the income is
coming from—and that, next quarter,
that income might go elsewhere (for
instance, to an obstetric specialist GP
who specialises in attracting women’s
vouchers, or to a paediatric GP who
specialises in attracting parents to
bring in their children’s vouchers).”
Chris Godwin
“Thinking of a ‘patient’ as an
‘empowered customer’ is very
appealing (and something worth
lobbying for), but I would say that
the phrase is still wishful thinking. I
believe that ‘consumption’ requires
free choice between substitutable
goods. We are far from having free
choice in healthcare. Even though
cross-border healthcare (of the type
described by Chris Godwin) varies
from country to country, the concept
is unfortunately a myth today.
Crossing borders in Europe to access
healthcare services requires prior
authorisation of reimbursement by
the health insurance at home (the
so-called ‘E112 form’), which is often
denied. We recently supported a
Belgian mother of two young children.
She had stage-IV melanoma, but
was refused an E112 because she was
trying to access a life-saving clinical
trial only available in France. All
her efforts failed, and only our joint
pressure on the Health Ministry made
the insurance change their minds.
We are far, far, far from having free
movement of health services over
European borders. We welcome
the current new momentum in the
Council of Health Ministers, even
though I am not too confident that
Member States will overcome their
fear of ‘healthcare shopping’ and its
impact on their budgets (for those
interested, see our activities at http://
bit.ly/chvvMk).
But, going back to the original
question, I think that using the term
‘consumer’ implies a competitive
market of goods consumed with
free choice, and I think that the
Should a patient
be called a patient?
healthcare market is too regulated
to assume that—at least in the
area of prescription medicines and
procedures.”
Jan Geissler
“Sorry if I didn’t make myself clear.
I’m not talking about “Thinking of a
‘patient’ as an ‘empowered customer’”,
but rather actually empowering the
‘customers’ with vouchers that would
allow them to empower themselves at
the primary-care level, and so engage
their GP in providing for them in
an active and responsive way. And
apologies again—I did not intend
to raise the topic of cross-border
healthcare, but was citing my direct
experience of living in Germany, and
my indirect experience of the medical
care of friends there. This was practice,
and I suggest, a practice that should
be introduced to my country, the
UK. And while I agree that perfect
“consumption requires free choice
between substitutable goods”, we live
and cope in a less-than-perfect world.
The UK should, at least, adopt the
benchmarks of the—undoubtedly—
less than perfect, albeit much better,
healthcare systems of neighbouring
EU States.”
Chris Godwin
“I think we are possibly confusing
two issues. One is the ‘patient’ from
a receiving point of view, and the
other is the ‘patient’ as someone
able to chose a range of services,
medicines, etc. The former could
disempower an empowered ‘patient’,
but the latter might empower the
more independent-minded ‘patient’.
Providers of services might see their
‘patients’ as ‘customers’, and it would
be good if these providers sought to
provide the same level of service that
any commercial organisation would
offer those purchasing goods or
services from them.”
Geoffrey Henning
24

‘Survivor’
is the
appropriate
term
because…
[2 comments]
l ‘Survivor’ has more positive
connotations than the term
‘patient’ [Kathy Oliver].
l ‘Survivor’ is a heroic term [Laetitia
Defaye].
“In the US brain tumour community,
‘patients’ are usually known as
brain tumour ‘survivors’ (with the
American spelling of ‘tumor’, of
course). Whereas, in Europe, the
term brain tumour ‘patient’ is used
more frequently. I think that the word
‘survivor’ has a much more positive
connotation, but different cultures
interpret words differently. I have also
heard it said that the term ‘consumer’
implies the possibility of choice, and
choice doesn’t really come into it for
‘patients’ (or ‘survivors’), as no one
would choose to be ill.”
Kathy Oliver
“I love the term ‘survivor’. Is very
heroic, and all. Very American way of
life—maybe less European.”
Laetitia Defaye
© PatientView 2010
‘Citizen’ is the
appropriate
term
because…
[1 comment]
l The across-the-board application
of the term ‘citizen’ can put other
people’s experiences in context
[Enrique ‘Topo’ Rodriguez].
“I subscribe to the ‘citizen’ name/
model promoted by post-modern
psychiatry, because, this way, we
can see to what any other ‘citizen’ is
entitled. For example, migrants or
criminals do not receive the same
treatment as ‘citizens’ (and, if mentally
ill, even worse). More food for
thought!”
Enrique ‘Topo’ Rodriguez
Should a patient
be called a patient?
‘Consumer
peer specialist’
is the
appropriate
term
because…
[1 comment]
l The phrase has grown in favour in
the US in the field of mental health
[Jim Blaha].
“‘Consumer peer specialist’ is
being used more and more in the
US in the field of mental health.
Each state is developing, or has
developed, training and certification
programmes, as have several national
groups. The Depression and Bipolar
Support Alliance (DBSA), National
Alliance on Mental Illness (NAMI),
and the United States Psychiatric
Rehabilitation Association (USPRA)
are a few.”
Jim Blaha
25

‘Ill person’
is the
appropriate
term
because…
[1 comment]
l The wide-ranging nature of the
phrase has allowed it to grow in
favour in France [Hugues Joublin].
“In France, this debate around naming
has led to preferences for “ill person”
(personne malade), to be sure that
we first consider the person as a full
person, with all its social, economical,
and psychological, etc, dimensions.”
Hugues Joublin
© PatientView 2010
No single term
is acceptable
because…
[11 comments]
l Many of the potential terms have
their own limitations [Alex Wyke].
l The terms are several—though
they are valid, depending upon the
circumstances in which they are
employed [Lisa Pohmajevich]
l The term ‘patient’ is particularly
restrictive [Frank Mulcahy].
l The applicability of the terms
varies by country and by disease
[Sandi Pniauskas].
l Globalisation means the
inevitability of different
terminology [Enrique ‘Topo’
Rodriguez].
l People can find several terms
relevant—though perhaps ‘patient’
is the most appropriate [Lynn
Plant].
l Labels can sometimes be
contradictory [Laetitia Defaye].
l The language of the various terms
has failed to keep pace with change,
rendering them only partially
relevant [Alexander Roediger].
l People can find several terms
relevant—though perhaps ‘patient’
is the least appropriate [Angeles
Barrios].
l Terminology varies between the
private and public healthcare
setting [Kathi Apostolidis].
l Terminology varies according to
the amount of control a person is
able to exert during interactions
with the healthcare system
[Andrew F. Hartnett].
“Over the years, patient groups have
told us to use all sorts of different
expressions to describe the ultimate
customers of health services. But, for
the most part, ‘consumer’ has not
been one of them. ‘User’, or ‘ex-user’, I
believe, is the most favoured.
‘Patient’, for some people, has
connotations of being sick. People
Should a patient
be called a patient?
with a mental health problem, or with
a chronic illness (such as diabetes), do
not see themselves as patients, as they
may have to live with their condition
every day. In the case of bipolar
depression, the symptoms come and
go. So, ‘patient’ is not preferred. And
‘consumer’ is certainly wrong, too.
Does anyone else have other views?”
Alex Wyke
“The label of ‘consumer’ has been
applied to a person when goods and
services are purchased, acquired,
consumed—much the same way as
‘customer’ is applied when interaction
surrounds the purchase of goods and
services.
A ‘patient’ label fits when
defining the relationship between an
individual and a healthcare provider,
professional, or system, and when
the individual is receiving care or
treatment.
In my opinion, as a nurse and a
marketing professional in the medical
device industry, the labels apply
appropriately to the individual based
on the relationship that one has with
an individual, or collective group/
segment of individuals. I don’t see
either label (‘patient’ or ‘consumer’)
diminishing or enhancing the
individual or relationship—impact
or effect occurs when interactions
between entities take place.”
Lisa Pohmajevich
“On this, I agree with Alex Wyke.
One is only a ‘patient’ of one’s doctor
or healthcare professional, and
nobody else (as described by Lisa
Pohmajevich). We should also respect
the views of groups, such as mental
health groups, who call themselves
‘survivors’ or ‘users’.”
Frank Mulcahy
“I have friends in the US who abhor
the term ‘consumer’, and, at the
same time, have friends in Canada
who prefer the term ‘patient’. When
I think of the term ‘citizen’, it is
26

all encompassing, but it still lacks
definition, as we are all citizens. (I
guess I will leave the issue of criminals
and their rights for another discussion,
as some would feel criminals have
better care/more rights than many
‘citizens’.) I also see differences in these
very good discussions, depending
on one’s location. Not to sound
negative, but if someone can find
an appropriate word and categorise
it, then you just might be the next
millionaire.
In our own cancer communities,
we have patients who do not care
for the term ‘survivor’. Some prefer
the term ‘thrivor’, but, alas, that is
not always the case. (Just thinking
out loud—which is dangerous,
sometimes.)”
Sandi Pniauskas
“Perhaps, as Sandi Pniauskas said, it
should not be a ‘one size fits all’, as
is current. Maybe we need a broader
classification to reflect different stages
of ‘wellness’ or ‘malness’.” Perhaps
we need to understand that, for
terminology, diagnosis, medication or
therapy, we should not be looking at a
‘blanket cover’.
By nature, we all are different.
By social and cultural upbringing,
countries like Greece and many other
have different ‘codes’. We are going
to have to accept that, in this world
of globalising tendencies, we need
to accept our uniqueness and our
differences.
Anecdote: I have a group of young
fourth-year psychology students
assisting me with a bipolar disorder
self-help group I run (a bit of work
experience for them, and better
dynamics for us). I quite often cringe
when they use the term ‘client’ to refer
to a person requiring their services.
I know—there’s not much I can do
about it.”
Enrique ‘Topo’ Rodriguez
“Having read all of the comments, and
pondered on the subject of ‘patient’
versus ‘consumer’, I think that we are
© PatientView 2010
guilty of trying to pin things down
to the two terms. ‘Patients’ know
that they are ‘patients’, and have an
understanding (in part) of what is
expected of them, and what they
expect from health professionals. The
difficulty comes when communicating
to people who are not ‘patients’. People
like to think that they are sophisticated
‘consumers’ in this day and age, but,
in reality, when it comes to health,
they see things very differently. I tend
to think of the UK’s National Health
Service (NHS), for instance, as being
two brands. One is the global brand,
the one people read about in the
papers, and hear all of the politics
around it. People are affected from
a distance, and they are more than
likely to think like ‘consumers’ when
reading, commenting, or experiencing
second hand. The other brand is the
personal brand of the NHS—my
NHS. This usually relates to something
personal about me and my experience.
I have found that when it is their own
episode in healthcare, then people
think more like ‘patients’, and feel
comfortable being called ‘patients’.”
Lynn Plant
“ ‘Patient’ requires patience, and
‘consumer’ requires consuming. Can
both coexist ...?”
Laetitia Defaye
“There is obviously a problem with
the term ‘patient’. Following the
discussion above, nobody seems to feel
comfortable with this wording; but, on
the other hand, there seems to be no
alternative.
What is wrong with ‘patient’?
Apparently, it does not reflect the role
of a ‘patient’, since it depicts the person
as passive (Latin—patiens—to suffer,
tolerate, etc). Today, we would rather
see ‘patients’ as empowered ‘citizens’,
who are health literate, informed
decision-makers who care about their
health and are engaged in therapy. In
other words: who are on the same level
as the doctor. The word ‘consumer’
contains this active element of a
Should a patient
be called a patient?
citizen who is able to make decisions
on the same level as the doctor, and
who is also able to say no. And what
does characterise autonomy better
than the ability to say no? However,
the term ‘consumer’ relates to
business, and we are reluctant to agree
that our health is a mere business
transaction.
The discussion reminds me of
that about the right wording for
‘compliance’. Or ‘adherence’? Or
‘concordance’? Again, the discussion
is about the new role of the ‘patient’
being on the same level as the doctor,
and not just following the doctor’s
instructions.
In addition, one could also propose
the term ‘customer’, but it contains the
same problems as ‘consumer’. What is
even more important than finding the
right wording—the whole discussion
shows that the role of ‘patients’ and
doctors has changed, while language
has not. And, I definitively agree, this
change takes place, and it is necessary.
But does wording have to change as
well?
I suppose that it does not make
much sense to look for new words—
often the search provokes the opposite
result, and the real intention will be
questioned again and again. And,
sometimes, the meaning changes
all by itself. Or does anybody today
care about the original meaning of
doctor?”
Alexander Roediger
“The same question (‘patient’ versus
‘consumer’) would apply for any
individual: are you a mother, a sister, a
wife? It depends on the situation, and
the role that one plays each moment.
In the case of people’s relationship
with health, medicine and healthcare,
they are ‘patients’, ‘consumers’, ‘users’,
‘citizens’ ... depending on the role
they play each moment towards the
healthcare system, and to their own
clinical situation. You can be a ‘user’,
but not a ‘patient’, or a ‘consumer’, but
not a ‘user’, or a ‘citizen’ (interested in
healthcare, medicine, conditions, as
a carer), but not a ‘user’, ‘patient’, or
27

‘consumer’. Anyway, I’ve never liked
the term ‘patient’; it refers to patience
and passive waiting, and that’s not
what should be expected nowadays for
someone affected by a disease.”
Angeles Barrios
“Hi, Geoffrey Henning. I see you
introduce two different notions: the
‘patient’s’ perspective as to how to
define him/herself, and the perspective
of the provider who sells or
administers services towards a ‘client’.
Is the ‘client’ a ‘patient’ or a ‘customer’?
In the private-healthcare sector,
where they sell services, the notion
of ‘customer’ might drive better
outcomes for ‘patients’. The reason is
that the seller wants the ‘customers’
satisfied, so that they either come
back, or recommend the seller to
acquaintances. Well, should we then
think of a different term, depending
on the context in which we speak
(‘patients’ context versus providers’
context)?”
Kathi Apostolidis
“I have always looked at the use of
the terms ‘consumer’ and ‘patient’
differently. This may be coloured
by my years as a trauma/air-
evac nurse, and a decade in the
pharmaceutical industry. If you make
an appointment, or control your
entry into the healthcare system,
and have expectations of care and
outcome, then you are a ‘consumer’.
If you are entered into the system (ER
admission, etc) with no conscious
expectation except that the system will
act on your behalf, you are a ‘patient’.”
Andrew F. Hartnett
© PatientView 2010
Labels have
disadvantages
because…
[6 comments]
FOR
l Labels categorise too firmly, too
permanently [Frank Mulcahy].
l Labels represent judgments
that may not be relevant [Sandi
Pniauskas].
l Labels are too narrow in
application—‘people’ might be the
best label [Richard Booton].
l Labels are too numerous—
‘individuals’ might be best label
[Lynn Plant].
l Labels restrict human beings
[Hugues Joublin].
AGAINST
l A label retains an important
function identifying medical
conditions [Enrique ‘Topo’
Rodriguez].
“The big problem is that of labels
themselves. If a person is seen as
having a specific label, they may not be
able to cross over from it to another.
(Good to see this topic opened; I look
forward to the comments on it.)”
Frank Mulcahy
“The best way that I feel about this is
that labels just do not seem to work, as
they place us in a ‘box’, so to speak.
Lisa Pohmajevich mentioned “I
don’t see either label (‘patient’ or
‘consumer’) diminishing or enhancing
the individual or relationship—impact
or effect occurs when interactions
between entities take place.” I think
the key words here are impact/affect,
and while most people would
expect (and hope) that labels do not
diminish respect and caring, this is not
necessarily true. These are judgments
which people make, and often not
incorrectly. See Topo Rodriguez’s
Should a patient
be called a patient?
example of people with a mental
health disorder.”
Sandi Pniauskas
“People strongly like to label for
convenience and ease of reference. Is
a person with a short-term mild cold
as much of a ‘patient’ as someone with
moderate Alzheimer’s, or another with
metastatic cancer? Do all ‘patients’
feel and act the same at all times? I
think we know the answers. So, in
different settings, it may be that they
are a ‘patient’, but, at other times,
they are (and very much want to be)
consumers, mums, uncles, workers,
taxpayers, irate citizens, etc. What they
are is ‘people’—in fact, people who
just happen to have illness of some
sort. In many countries and cultures,
there is a real stigma associated with
being ill—especially seriously ill—and
‘people’ will go to considerable lengths
to avoid telling their family, employer,
friends. So, off with the labels, and on
with trying to understand their fears,
hopes, frustrations and aspirations as
‘people’!”
Richard Booton
“I think Richard Booton has a valid
point about ‘people’. More than that,
we are dealing with ‘individuals’. It is
important to remember this. I believe
that we should not look at what we
label ‘people’, ‘patients’, ‘consumers’, or
‘users’. The variety of words is endless.
We should look at how we start and
end our interaction with them as
‘individuals’. The people most likely
to have an effect on ‘patients’ is their
medical team, and the correspondence
they thereafter receive.
Publically, when we are raising
awareness to the public about (in
our case) the UK’s National Health
Service (NHS), we should look at
how we inform, consult and involve,
how we deal with the public on a
one-to-one basis—although across
many channels. This way, we avoid
any labelling. I believe that we have a
duty to look at our communications
in general, to position those messages
28

with clear objectives on what we wish
to achieve. Not to try to put people
into clear categories, but look at what
we need to inform, or impart to,
or communicate and consult with.
The world of health is varied and
changing, and it encompasses all of us
at some time or other.”
Lynn Plant
“Just to add an ethical aspect to the
discussion: trying to categorise human
beings into labels always bears the risk
of restricting their capabilities and
potential.”
Hugues Joublin
“Far from being a dilemma
of terminology, semantics, or
colloquialisms, it is important to
reflect on the name or label given to a
person, because the label indicates not
only what condition we have, but also
what we are NOT entitled to receive.”
Enrique ‘Topo’ Rodriguez
© PatientView 2010
The debate
is pointless
or sterile
because…
[6 comments]
FOR
l The various terms are all applicable
[Sandi Pniauskas].
l The various terms may have
no permanent relevance [Kathi
Apostolidis].
l Key criteria under discussion are
not relevant [Ron Marsh].
l Discussions around mere
terminology lead to no concrete
improvements [Sandi Pniauskas].
l Larger changes in healthcare are
needed than to mere healthcare
terminology [Mira de Vries].
AGAINST
l The debate around issues of
terminology has value, but larger
questions in healthcare also need to
be addressed [Chris Godwin].
“Much discussion has surrounded the
terminology of how people wish to be
recognised. In my view as a member
of the Cochrane Collaboration
and numerous patient/consumer
groups, the terminology—whether
it be ‘patient’, or ‘consumer’, or ‘user’,
etc—still has not been decided. A
‘one-size-fits-all’ approach is common.
What we need is either a new word,
or, to try not to be caught up in the
semantics—to hear and learn from an
individual’s perspective (for instance,
who are you in your own words, and
where have you been).
Patient safety groups have
discussed patient terminology.
Variance of opinion seems to depend
on where you live, and which
healthcare and political systems affect
you. I think that such discussion
is a philosophical approach which
may never be resolved within the
Should a patient
be called a patient?
limitations of the English language.
So, I agree with the many views
here, except to say that I believe, again,
that we are playing semantics with
possibly minor issues. That’s my bias,
however, based on my specialties
(ovarian cancer/genetics). In my
personal networks, we are all ‘patients’,
and all ‘consumers’, and ‘users’ (of the
system).”
Sandi Pniauskas
“Greece is running on very slippery
roads that are not only financial. I
have a feeling these days that talking
about such things as terminology, as
we do here, is completely nonsense
under the circumstances. The labour
legislation that took decades to
be established in Greece has been
abolished, and the social benefits and
social welfare tightly linked to labour
legislation are following.
Does it then make sense how we
will be called if what makes us strong
to advocate for today most probably
will not be in place tomorrow or even
late tonight?”
Kathi Apostolidis
“The discussion thus far has appeared
to concentrate on the ability to choose
between healthcare providers—a
facility that strikes me as unimportant
and unnecessary. ‘Customers’ and
‘consumers’ do not necessarily have
such choice in other markets. In this
case, I consider the debate is leading
nowhere.”
Ron Marsh
“A very valid point, Ron Marsh, on the
choice and market issue. After years of
debates and discussions on the terms
which we use to describe ourselves,
we are no further ahead. Is it time
to simply accept what may be called
a disparity of languages, and move
beyond philosophy?
I guess we need to differentiate
between issues of semantics and
terminology—‘patient’ versus
‘consumer’ versus ‘something else’.
29
 Should a patient
be called a patient?

It is not a matter of throwing

our arms up in the air, but I think Stephen McMahon, the
there are more important issues than
discussing nouns and verbs. As a born originator of the May-
advocate, and having been involved
personally in just about every single September 2010 ‘patient-
issue a person could experience,
“giving up” or “arms in the air” is not consumer’ Patient Pages
my language, and I am trying to take
the me part out of this, and look at debate, offers some concluding
the broader picture here. In my view,
the important issue as a bottom line words
is not the technical issues of what we
call ourselves, and how others perceive “This debate will continue, because In the final analysis, my leaning is
us, but recognising when we need it has created a clear framework for still towards the term ‘patient’. Not so
to move forward. I, though, seem to further discussion by other interested long ago, to a mortally-ill patient or
be at odds with the many—which parties. casualty, the term ‘triage’ offered a far
is perfectly fine, and I appreciate Whatever term is used really poorer outcome than it does today.
everyone’s views, with thanks.” depends on the social and personal So, too, for the term ‘patient’, which is
Sandi Pniauskas perceptions of the person uttering losing its previous connotations as the
it, and this we must respect. What ‘patient’ emerges as the key person in
is of note, though, is that some the healthcare system.
“The real problem is not the word contributors to the debate rightly This is our mission as patient
‘patient’ itself, but the subjugation explored the unexpected consequences advocates—to enrich the values
it has come to represent. When of using a particular term—be of this old term, ‘patient’, and
the labyrinth of laws that deprives it ‘citizen’, ‘consumer’, ‘patient’, create an opportunity for society
citizens of the human right of free ‘stakeholder’, etc. The state may to demonstrate solidarity with its
contract in healthcare is revoked, the prepare a healthcare system for its population of patients—keeping them
word ‘patient’ will lose its negative ‘citizens’; however, when ‘citizens’ at the centre of the healthcare system.
connotation.” needs to access that system, they Enjoy the spaciousness of your
Mira de Vries become, in my view, ‘patients’. health. The debate continues.”
Some contributors moved away
from the term ‘patient’, as it could Stephen McMahon
“Not important to be able to choose be considered disempowering. Chairman, Irish Patients’ Association
who provides you with an expert Others wanted the term to reflect Council Member at the Irish Council
service? It absolutely is, in choosing all empowerment and other values—a of Bioethics
other professional services I can think key stakeholder concept. December 2010
of—and, in healthcare, is a surely key
reason why people in the UK make
sacrifices to buy their way out of using
only the country’s National Health
Service (NHS). While the ‘patient’
is non-expert, there is major value
in having the chosen GP advise on
choices, such as other health services
providers. Also, surely, this debate
is vital. It bothers me that there is a
response to close it down. Why so shy
of moving “beyond philosophy” and
the UK adopting the demonstrably
superior practice of its next-door-
neighbour EU States?”
Chris Godwin

© PatientView 2010 30