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Exclusion on grounds of language ability - A reporting gap in health services

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Article  in  Journal of Health Services Research & Policy · November 2007

DOI: 10.1258/135581907782101642 · Source: PubMed

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 Original research

Exclusion on grounds of language ability – a

reporting gap in health services research?

Susan Murray, Ana Maria Buller

King’s College London, London, UK

Background: Health services research practices in the context of ethnic and cultural diversity are under
scrutiny. One issue that needs to be considered is that of inclusion in, and exclusion from, research studies
on the basis of language ability. We explore current reporting practice concerning recruitment of partici-
pants in health services research using examples from one ‘high impact’ journal and suggest ways in which
future reporting can be strengthened.
Methods: Retrospective review of 207 ‘original research pieces’ published in the BMJ. Inclusion criteria:
articles published in 2003 and 2004 reporting research entailing direct communication between a researcher
and health service users. A data extraction checklist was applied concerning the reporting of language-
related decisions in recruitment.
Results: Eighty-four percent of the research articles did not engage with language issues at all. For most
papers it was impossible to ascertain whether research was carried out in a monolingual population or
whether researchers had e¡ectively excluded non-primary language speakers in their recruitment proce-
dures. Over half (n ¼ 34) of the papers that mentioned language did so in relation to exclusion criteria, usual-
ly without further comment.
Conclusions: Reporting practice on language-related decisions in recruitment and on the exclusion of
research participants on grounds of language ability needs to be improved. A checklist for authors,
reviewers or editors is o¡ered with the aim of encouraging fuller reporting on the language composition
of source and sample populations, and greater consideration of any implications that exclusion/inclusion
on the grounds of language may have for studies and their ¢ndings.
Journal of Health Services Research & Policy Vol 12 No 4, 2007: 205–208 r The Royal Society of Medicine Press Ltd 2007

Introduction Sheikh et al.3 compared the reporting on ethnicity in US

Population movement due to globalization of econo-
mies, urbanization, conflict and increased ease of travel
has resulted in greater cultural and linguistic diversity
within many communities around the world. Europe
has recently seen a resurgence of interest at policy level
in social inequalities in health and in access to health
care. In some countries, this has included explicit
reference to equal opportunities and to racial equality.1
Health services research practices in the context of this
ethnic and cultural diversity have recently begun to come
under scrutiny. In the US, the National Institutes of
Health now actively encourage and coordinate efforts to
develop clinical trials that recruit minorities, through the
Office of Research on Minority Health,2 but few other
countries have such an active commitment to incorporate
ethnic diversity in health research. Writing in the BMJ,
Susan F Murray PhD, Senior Lecturer, Ana Maria Buller MSc,
Research Associate, Florence Nightingale School of Nursing and
Midwifery, King’s College London, Waterloo Bridge Wing, 5th floor,
Franklin Wilkins Building, Stamford Street, London SE1 9NH, UK.
Correspondence to: susan_fairley.murray@kcl.ac.uk
and European randomized controlled trials, and found
that American studies were more likely to report on
ethnicity than those from European countries. In their
2006 review of cardiovascular cohort studies, Ranga-
nathan and Bhopal4 found a general shortage of
information on racial/ethnic minority populations, and
noted that in Europe many cohort studies persist in
focusing on white populations despite being set in multi-
racial/ethnic nations. Assumptions about the reluctance
of racial and ethnic minorities to participate in health
research due to mistrust of the scientific community and
institutions,5,6 or lack of understanding of the impor-
tance of research,7 have also been challenged recently.
Wendler et al.8 analysed the enrolment decisions of over
70,000 individuals, mainly from the US, but also from
Europe and Australasia, in a broad range of research
from interviews to surgical trials. They found very small
differences in the willingness of minorities to participate
in health research, and highlighted a need to focus on
ensuring proper access to participation in such research.
One of the barriers to participation in research for
some members of minority groups is language.9–12 In
1996, Frayne and colleagues published a ground

J Health Serv Res Policy Vol 12 No 4 October 2007 205

Original research Strengthening the reporting of language issues in health research
breaking survey of researchers whose work had been
published in major US medical journals during the
period 1989–91. The article highlighted the frequent
exclusion of non-English speakers from such research at
that time – often, apparently, through oversight – and
argued for heightened awareness among researchers
and granting institutions.12
Has the health services research community devel-
oped a sufficiently heightened awareness of language
as a barrier to research participation since then? In
order to explore this question we carried out a
review of four volumes of the BMJ’s ‘original
research’. The BMJ is published weekly, has an
estimated 931,527 unique users of its online site (source:
http://bmj.bmjjournals.com/aboutsite/index.shtml), and
has a national (UK) and international readership of
doctors, medical students, academic researchers, other
health care professionals, and policy-makers. Along
with JAMA, the BMJ is one of only two of the top 10
‘impact factor’ ranked journals in the ISI Journal
Citation Reports for the Medicine, General and
Internal subject category to include in its instructions
to authors some guidance on categorization and
reporting of ethnic group. However, this guidance
does not currently extend to the reporting of language.
Methods
We searched the BMJ’s electronic database for all
articles published between January 2003 and Decem-
ber 2004 inclusive, that fell into the journal’s category
of ‘original research’ (‘Papers’, ‘Primary Care’, ‘Learn-
ing in Practice’ and ‘Information in Practice’). We
selected all papers reporting research that had entailed
some element of direct communication between a
researcher/research team and health service users. We
excluded secondary analyses except when the original
data collection was conducted by the same author/
research team. Articles were categorized according to
whether the study had used quantitative, qualitative, or
mixed methods of data collection, or had required
communication only for information and consent
processes. Articles fulfilling the inclusion criteria were
reviewed and data extracted against the following
checklist:

title, location and type of research;

mention of language considerations in exclusion
criteria;

account given of language issues within methods
section;

any mention of language issues elsewhere in the
paper, in a cited reference document or in a web
version detailing study methods that was easily
accessible in the public domain.
Descriptive statistics (frequencies and percentages)
were used to analyse the data.
Of the 207 (100%) articles that met the inclusion
criteria, 106 (51%) reported on studies wholly or partly
206 J Health Serv Res Policy Vol 12 No 4 October 2007
conducted in the UK and 101 (49%) on those
conducted in other countries. One hundred and
twenty-five (60%) had used quantitative data collection
tools such as questionnaires; 38 (18%) used qualitative
tools such as focus groups or in-depth interviews; and a
few (n ¼ 9, 4%) combined both in their approach.
Thirty-five (17%), mostly randomized controlled trials,
required researcher–participant communication only
for the information and consent process.
Results and discussion
Eighty-four percent of the original research articles
included in our review did not mention language at
any point. A minority, 16% (n ¼ 34; 16 conducted in the
UK and 18 in other countries) did mention language
considerations. In over half of this group (n ¼ 18; nine
UK and nine non-UK), inability to speak or understand
the primary language was given as the exclusion
criterion for the study, usually without further com-
ment on its implications. Two studies reported that the
population all spoke the same language (English).13,14
Twelve studies (five UK and seven non-UK) did include
non-primary language speakers in their samples and
reported on the method used to deal with this.
Two further studies (one UK and one non-UK),
mentioned that the sample included non-primary
language speakers, but did not report on the strategy
used to deal with this, possibly because of pressures of
space.15,16
How may we understand the significance of the
finding that 84% of the research articles did not report
any language-related issue at all? Some studies were
probably conducted in completely monolingual popu-
lations by researchers who had the same mother
tongue. However, because no information was pro-
vided on the language composition of the target
population, it is not possible for readers of these
papers to ascertain this with certainty. We are a
research group based in London, so using our local
knowledge we examined the sub-sample of 90 articles
that reported studies conducted exclusively in the UK,
but which had made no mention of language. We could
identify eight studies which had probably been con-
ducted in populations in which there would be good
universal command of a single language (English):
these were studies of the British Army;17–19 of civil
servants;20,21 of health service staff;22 of a cohort of
middle-aged men and women who were born in the
UK;23 and of secondary school pupils.24 But for the
remaining 82 UK research papers in this category we
simply did not have sufficient information to know how
many of the studies had taken place in genuinely
monolingual populations and how many had operated
‘effective exclusion’ of non-primary language speakers
in their recruitment procedures, for example, by
producing information and data collections tools only
in English. This seems to be a considerable deficiency
in current research reporting practice.
Strengthening the reporting of language issues in health research
Conclusion
The Vancouver Group’s Statement on the Uniform
Requirements for Manuscripts submitted to Biomedical
Journals,25 Section 6a (accessed online 28 March 2006)
advises authors to ‘describe your selection of the
observational or experimental participantsy clearly,
including eligibility and exclusion criteria and a
description of the source population. The guiding
principle should be clarity about how and why a study
was done in a particular way’.
By contrast, the principal finding of this survey of
original health services research articles published in
the BMJ is of a general deficit of information on
language in the reporting of research recruitment
decisions. Our review covers only two years of research
reported in one ‘high-impact’ journal, but we have no
reason to think that these results are atypical. We found
that the language composition of the samples and
source populations was rarely described. Yet this is
important both for gauging the generalizability of
research study findings and as an essential first step
to taking multilingualism into account in the way
research is designed.
A few studies did mention language considerations
within their exclusion criteria, but in most cases it
appeared that exclusion of non-primary language
speakers from health services research may occur
by default. When exclusion on the grounds of
language was acknowledged in the articles surveyed,
no explanation was given of the rationale behind this
decision or the consequences this might have regarding
limitations of the study findings. Inclusion of
non-primary language speakers may not be possible
or necessary for every study, but there is a need
for greater awareness and transparency on this
issue within the health services research community.
We suggest that the language characteristics of
source populations should be described wherever
possible. When exclusion from a study on language
grounds is deemed necessary, it needs to be reported
and the rationale for that decision should be clearly
argued.
In Box 1 we outline a draft checklist on the reporting
of language decisions in the recruitment of participants
that could be used by researchers, peer reviewers or
editors. In advocating this, our intention is not to
downplay the considerable challenges posed by multi-
lingual research. Researchers need to be very aware of
the difficulties that working across languages presents
for the adaptation of instruments at the design
stage26–30 and for effective data collection and analy-
sis.31–35 Multilingual research is far more complex and
considerably more costly to carry out than monolingual
research.7 Done badly, the processes may be unethical
(www.corecform.org.uk) or the results meaningless.
Our checklist is based on a position that it is good
practice for all papers reporting on population-based
research to state the language composition of the
source population under study explicitly, and to
consider the implications this had for the research
J Health Serv Res Policy Vol 12 No 4 October 2007
Original research
Box 1 Checklist for the reporting of language issues relating to the
recruitment of study participants
1 Is the language composition of the population to be studied/
from which the sample is to be drawn clearly described?
2 Are the eligibility criteria for the sample clearly defined in
relation to the language(s) of the population?
3 When potential participants are excluded on the basis of
language:

Is this exclusion made explicit in the exclusion criteria?

Is this exclusion justified?

Is there any comment made concerning the implications for
generalizability of findings resulting from this exclusion?
4 When non-primary language participants are included in a
sample:

Is there a sufficiently detailed description on the language
related procedures followed to obtain informed consent, and
the rationale behind these?
design and sampling. The advent of online publishing
has removed much of the pressure of word limits and
should permit fuller and more reflective accounts of
methodological decisions and processes, and their
implications for study findings. Exclusions on the basis
of language should be justified. In turn, such reporting
should contribute to the development of higher quality
designs that permit proper inclusion of all sectors of the
population, and to funding practices that actively
encourage their inclusion.
Acknowledgements
This paper arose out of preparatory work for the Estimation of Access to
Maternity Care Study, which is funded by the Guy’s and St Thomas’
Charity, UK.
References
1 Judge K, Platt S, Costongs C, Jurczak K. Health Inequalities:
A Challenge for Europe. London: Department of Health,
2006
2 National Institutes of Health. Strategic Research Plan to
Reduce and Ultimately Eliminate Health Disparities. Fiscal
Years 2002–2006. Washington, DC: United States Depart-
ment of Health and Human Services, 2006
3 Sheikh A, Netuveli G, Kai J, Panesar SS. Comparison of
reporting of ethnicity in US and European randomised
controlled trials. BMJ 2004;329:87–88
4 Ranganathan M, Bhopal R. Exclusion and inclusion of
nonwhite ethnic minority groups in 72 North American and
European cardiovascular cohort studies. PLoS Med
2006;3:e44
5 Moreno-John G, Gachie A, Fleming CM, et al. Ethnic
minority older adults participating in clinical research:
developing trust. J Aging Health 2004;16:93S–123S
6 King Jr TE. Racial disparities in clinical trials. N Engl J Med
2002;346:1400–2
7 Sheikh A. Why are ethnic minorities under-represented in
US research studies? PLoS Med 2006;3:e49
8 Wendler D, Kington R, Madans J, et al. Are racial and ethnic
minorities less willing to participate in health research?
PLoS Med 2006;3:e19
9 Hussain-Gambles M, Atkin K, Leese B. Why ethnic
minority groups are under-represented in clinical trials: a
review of the literature. Health Soc Care Community 2006;
12:382–8
10 Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott
R. Barriers to participation in randomised controlled trials:
a systematic review. J Clin Epidemiol 2006;52:813–28
207
Original research Strengthening the reporting of language issues in health research
11 Jacobs E, Alvarado-Little W, Hardt E. Recommendations for
the ethical involvement of limited English speakers in
research. Report No. 1. National Council on Interpreting in
Health Care, 2001
12 Frayne SM, Burns RB, Hardt EJ, Rosen AK, Moskowitz
MA. The exclusion of non-English-speaking persons from
research. J Gen Intern Med 1996;11:39–43
13 Stanley B, Fraser J, Cox NH. Uptake of HIV screening in
genitourinary medicine after change to ‘opt-out’ consent.
BMJ 2003;326:1174
14 Slap GB, Lot L, Huang B, Daniyam CA, Zink TM, Succop
PA. Sexual behaviour of adolescents in Nigeria: cross
sectional survey of secondary school students. BMJ
2003;326:15
15 Craig TKJ, Garety P, Power P, et al. The Lambeth Early
Onset (LEO) Team: randomised controlled trial of the
effectiveness of specialised care for early psychosis. BMJ
2004;329:1067
16 Gupta PC, Sreevidya S. Smokeless tobacco use, birth weight,
and gestational age: population based, prospective cohort
study of 1217 women in Mumbai, India. BMJ
2004;328:1538
17 Hotopf M, David AS, Hull L, Nikalaou V, Unwin C, Wessely
S. Gulf war illness – better, worse, or just the same? A cohort
study. BMJ 2003;327:1370
18 Lawrenson G, Ogden J. Security duties in Northern Ireland
and the mental health of soldiers: prospective study. BMJ
2003;327:1382
19 Maconochie N, Doyle P, Carson C. Infertility among male
UK veterans of the 1990–91 Gulf war: reproductive cohort
study. BMJ 2004;329:196–201
20 Hemingway H, Shipley M, Britton A, Page M, Macfarlane P,
Marmot M. Prognosis of angina with and without a
diagnosis: 11 year follow up in the Whitehall II prospective
cohort study. BMJ 2003;327:895
21 Britton A, Shipley M, Marmot M, Hemingway H. Does
access to cardiac investigation and treatment contribute to
social and ethnic differences in coronary heart disease?
Whitehall II prospective cohort study. BMJ 2004;329:318
22 Doll R, Peto R, Boreham J, Sutherland I. Mortality in
relation to smoking: 50 years’ observations on male British
doctors. BMJ 2004;328:1519
208 J Health Serv Res Policy Vol 12 No 4 October 2007
View publication stats
23 Richards M, Shipley B, Fuhrer R, Wadsworth MEJ.
Cognitive ability in childhood and cognitive decline
in mid-life: longitudinal birth cohort study. BMJ 2004;
328:552
24 Anderson HR, Ruggles R, Strachan DP, et al. Trends in
prevalence of symptoms of asthma, hay fever, and eczema in
12–14 year olds in the British Isles, 1995–2002: question-
naire survey. BMJ 2004;328:1052–3
25 International Committee of Medical Journal Editors. Uni-
form requirements for manuscripts submitted to Biomedi-
cal Journals Vancouver Group, February 2006
26 Sechrest L, Fay TL, Zaidi SMH. Problems of translation
in cross-cultural research. J Cross-Cultural Psychol 1972;3:
41–56
27 Bhopal R, Vettini A, Hunt S, Wiebe S, Hanna L, Amos A.
Reviews of prevalence data in, and evaluation of methods
for cross cultural adaptation of UK surveys on tobacco and
alcohol in ethnic minority groups. BMJ 2004;328:76–82
28 Berkanovic E. The effect of inadequate language translation
on Hispanics’ responses to health surveys. Am J Public Health
1980;70:1273–81
29 Guillemin F, Bombardier C, Beaton D. Cross-cultural
adaption of health-related quality of life measures: litera-
ture review and proposed guidelines. J Clin Epidemiol
1993;46:1417–32
30 Hunt S, Bhopal R. Self reports in research with non-English
speakers. BMJ 2003;327:352–3
31 Pitchforth E, van Teijlingen E. International public health
research involving interpreters: a case study from Bangla-
desh. BMC Public Health 2005;5:71
32 Esposito N. From meaning to meaning: the influence of
translation on non-English focus group research. Qual
Health Res 2001;11:568–79
33 Jentsch B. The ‘interpreter effect’: rendering interpreters
visible in cross-cultural research and methodology. J Eur Soc
Policy 1998;8:275–89
34 Temple B, Young A. Qualitative research and translation
dilemmas. Qual Res 2004;4:161–78
35 Tsai JH-C, Choe JH, Lim JMC, et al. Developing culturally
competent health knowledge: issues of data analysis of
cross-cultural, cross-language qualitative research. Int J
Qual Methods 2004;3:1–14