Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma.
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.


RESULTS
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.
Sheikh
Aziz
A
Allergy & Respiratory Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, United Kingdom. Aziz.sheikh@ed.ac.uk
Halani
Laila
L
Bhopal
Raj
R
Netuveli
Gopalakrishnan
G
Partridge
Martyn R
MR
Car
Josip
J
Griffiths
Chris
C
Levy
Mark
M
D001249:Asthma / Q000208:ethnology*; D001291:Attitude of Health Personnel; D001459:Bangladesh / Q000208:ethnology; D002986:Clinical Trials as Topic; D003144:Communication Barriers; D003467:Cultural Deprivation; D006291:Health Policy; D006297:Health Services Accessibility; D054625:Healthcare Disparities; D006801:Humans; D007194:India / Q000208:ethnology; D007857:Leadership; D008913:Minority Groups / Q000523:psychology; D010154:Pakistan / Q000208:ethnology; D018579:Patient Selection; D011287:Prejudice; D012108:Research Personnel / Q000523:psychology*; D006113:United Kingdom; D014481:United States