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Cited by 80Ethics in Clinical ResearchRace, Genetics, and SocietyCultural Competency in Health Care

Facilitating the Recruitment of Minority Ethnic People into Research: Qualitative Case Study of South Asians and Asthma

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Sheikh, Aziz, Halani, Laila, Bhopal, Raj, Netuveli, Gopalakrishnan, Partridge, Martyn R., Car, Josip, Griffiths, Chris, Levy, Mark·2009·PLoS Medicine
DOI 10.1371/journal.pmed.1000148PMC PMC2752116
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Abstract

BACKGROUND: There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated approaches to bolster recruitment of South Asians into UK asthma studies through qualitative research with US and UK researchers, and UK community leaders. METHODS AND FINDINGS: Interviews were conducted with 36 researchers (19 UK and 17 US) from diverse disciplinary backgrounds and ten community leaders from a range of ethnic, religious, and linguistic backgrounds, followed by self-completion questionnaires. Interviews were digitally recorded, translated where necessary, and transcribed. The Framework approach was used for analysis. Barriers to ethnic minority participation revolved around five key themes: (i) researchers' own attitudes, which ranged from empathy to antipathy to (in a minority of cases) misgivings about the scientific importance of the question under study; (ii) stereotypes and prejudices about the difficulties in engaging with minority ethnic populations; (iii) the logistical challenges posed by language, cultural differences, and research costs set against the need to demonstrate value for money; (iv) the unique contexts of the two countries; and (v) poorly developed understanding amongst some minority ethnic leaders of what research entails and aims to achieve. US researchers were considerably more positive than their UK counterparts about the importance and logistics of including ethnic minorities, which appeared to a large extent to reflect the longer-term impact of the National Institutes of Health's requirement to include minority ethnic people. CONCLUSIONS: Most researchers and community leaders view the broadening of participation in research as important and are reasonably optimistic about the feasibility of recruiting South Asians into asthma studies provided that the barriers can be overcome. Suggested strategies for improving recruitment in the UK included a considerably improved support structure to provide academics with essential contextual information (e.g., languages of particular importance and contact with local gatekeepers), and the need to ensure that care is taken to engage with the minority ethnic communities in ways that are both culturally appropriate and sustainable; ensuring reciprocal benefits was seen as one key way of avoiding gatekeeper fatigue. Although voluntary measures to encourage researchers may have some impact, greater impact might be achieved if UK funding bodies followed the lead of the US National Institutes of Health requiring recruitment of ethnic minorities. Such a move is, however, likely in the short- to medium-term, to prove unpopular with many UK academics because of the added "hassle" factor in engaging with more diverse populations than many have hitherto been accustomed to.

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  • In the first example, an intrinsic case study of recruitment of minority ethnic people into asthma research developed into an instrumental case study, generating findings potentially transferable to other disease contexts.

    “In the first of our examples (Table 1), we undertook an intrinsic case study to investigate the issue of recruitment of minority ethnic people into the specific context of asthma research studies, but it developed into a instrumental case study through seeking to understand the issue of recruitment of these marginalised populations more generally, generating a number of the findings that are pot”

    From The case study approach (2011) · cites this paper as [3]

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Authors
Sheikh, A., Halani, L., Bhopal, R., Netuveli, G., Partridge, M. R., Car, J., Griffiths, C., & Levy, M.
Affiliations
  • University of Edinburgh (GB)
  • Imperial College London (GB)
  • Queen Mary University of London (GB)
Corresponding author
Sheikh, Aziz
ORCID
Venue
PLoS Medicine
Publisher
Public Library of Science (PLoS)
Published
2009-10-13
Volume
6
Issue
10
Pages
e1000148
ISSN
  • 1549-1277 (ISSN-L)
  • 1549-1676
DOI
10.1371/journal.pmed.1000148
PMC
PMC2752116
OpenAlex
W1996731799
Cited by
79
References
39
Citations by year
2026: 2 · 2025: 3 · 2023: 1 · 2022: 2 · 2021: 1 · 2020: 6 · 2019: 3 · 2018: 2 · 2017: 7 · 2016: 7 · 2015: 4 · 2014: 8 · 2013: 6 · 2012: 11
FWCI
9.08
Type
journal article
Language
en
Open access
Licence
Locations
  • PLoS Medicine (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • UEL Research Repository (University of East London) (acceptedVersion)
  • UEL Research Repository (University of East London) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • ERA (submittedVersion)
  • Figshare (submittedVersion, cc-by)
  • Edinburgh Research Explorer (University of Edinburgh) (submittedVersion, cc-by)
  • Queen Mary Research Online (Queen Mary University of London) (submittedVersion, cc-by)
Funders
  • AstraZeneca
  • GlaxoSmithKline
  • Asthma and Lung UK
  • Merck Sharp and Dohme
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
  • Social Sciences › Sociology and Political Science › Cultural Competency in Health Care
Keywords
research recruitment, ethnic minority participation, South Asians, asthma, barriers to participation, researcher attitudes, stereotypes and prejudice, language barriers, cultural differences, community leaders, gatekeepers, reciprocal benefits, research funding policy, United States and United Kingdom comparison, health disparities, community-engaged research, informed consent
MeSH terms
Asthma, Attitude of Health Personnel, Bangladesh, Clinical Trials as Topic, Communication Barriers, Cultural Deprivation, United Kingdom, Health Policy, Health Services Accessibility, Humans, India, Leadership, Minority Groups, Pakistan, Prejudice, Research Personnel, United States, Patient Selection, Healthcare Disparities

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