Aziz SheikhUniversity of Edinburgh

Cross-cultural competence in Health & Social ResearchLeicester, 24 April 2006

Recruiting minority populationsDifficulties and solutions

• Why is the subject important?– Changing demography– Persistent health inequalities– Scientific interest– Legal and policy developments

• Extent of under-recruitment• Barriers to recruitment• Short- and long-term strategies for

enhancing recruitment• Conclusions

Overview

Why is the subject important?

Ethnic minority populations in 1991 and 2001

Poor health by sex and ethnic group, 2001

Disproportionate asthma morbidity

• Compared with Whites:– Blacks: x2 risk of

hospital admission– South Asians: x3

risk of hospital admission

Netuveli et al. Lancet 2005; 365:312-17

Legislative and policy developments

• Human Rights Act (Article 14)

• Race Relations Act 1976 & (Amendment) Act 2000– Eliminate racial discrimination– Promote equality of

opportunity– Promote good race relations

• NHS Patients’ Charter– “You have the right to choose

whether or not you want to take part in medical research”

National Institutes of Health

“These [NIH] guidelines require that women and members of minority groups and their sub-populations be included in any NIH-supported biomedical and behavioral clinical research project involving human subjects…

Cost is not an acceptable reason for exclusion, except when the research would duplicate data already available from other sources”

Extent of under-recruitment

Mason et al. BMJ 2003; 326: 1244-45

Sheikh et al. BMJ 2004; 329: 87-88

Location of trial Total Reporting of ethnicity

n Yes (%) No (%)

US 59 23 (39) 36 (61)

Europe 95 7 (7) 88 (93)

Total 154 30 (19) 124 (81)US v Europe: RR=5.3; 95%CI 2.4-11.6; P<0.0001

Sheikh et al. BMJ 2004; 329: 87-88

Location of asthma trial

Total Reporting of ethnicity

n Yes (%) No (%)

US 35 22 (63) 13 (37)

Europe 35 1 (3) 34 (97)

Total 70 23 (33) 47 (67)US v Europe: RR=22; 95%CI 3.1-154.4; P<0.0001Sheikh et al. Thorax 2004; 59: 634

No. AUTHOR SECTION OF REPORT IN WHICHETHNICITY MENTIONED

SUB-GROUP ANALYSIS BASED ON ETHNICITY

1 Barnes NC 2000 Baseline characteristics No

2 Banov CH 2001 Baseline characteristics No

3 Bleecker ER 2001 Baseline characteristics No

4 Brabson JH Baseline characteristics No

5 Busse W 2001a Baseline characteristics No

6 Busse W 2001b Baseline characteristics No

7 Calhoun W 2001a Baseline characteristics No

8 Calhoun W 2001b Baseline characteristics No

9 Fish JE 2001 Baseline characteristics No

10 Gershman NH 2000 Baseline characteristics No

11 Guendelman S 2002 Baseline characteristics No

12 Israel E 2002 Baseline characteristics No

13 Kim KT 2000 Baseline characteristics No

14 Lemanaske RF 2001 Baseline characteristics No

15 Mellon M 2000 Baseline characteristics No

16 Meltzer EO 2002 Baseline characteristics No

17 Migrom H 2001 Baseline characteristics No

18 Nathan RA 2001 Baseline characteristics No

19 Nelson HS 2001 Baseline characteristics No

20 Shapiro G 2000 Baseline characteristics No

21 Shapiro G 2001 Baseline characteristics No

22 Shapiro GS 2002 Baseline characteristics No

23 ZuWallack R 2000 Baseline characteristics No

Ranganathan and Bhopal. PLoS Med 2006; 3: e44

Barriers to recruitment

"Now that we know the laws of heredity, it is possible to a large extent to prevent unhealthy and severely handicapped beings from coming into the world.

I have studied with interest the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value.”

Adolf Hitler

The science of eugenics

“We must never forget the criminal Tuskegee syphilis experiment…

Yes, they lynched black women back then just as the AIDS establishment now wishes to lynch young black mothers with the deadly drug AZT.”

Wendler et al. PLoS Med. 2006; 3 :e19

Jolly et al. BMC Med Res Methodol. 2005; 5: 18.

Jolly et al. BMC Med Res Methodol. 2005; 5: 18.

Marquez et al. J Bone Miner Res 2003; 18: 3-8

• Language barriers• Costs• Lack of knowledge about ethnic minorities• Difficulties in engaging and forming

relationships• Problems with obtaining meaningful consent

• Considerable hassle, for no real scientific benefit

Issues raised by researchers: preliminary findings

Strategies for enhancing recruitment

Hussain-Gambles. Fam Pract 2004; 21: 636-42

• Carefully choose areas to be studied so additional resources needed to recruit are likely to be seen as justifiable

• Recognise that there are pockets of excellence throughout the UK with a proven track record of recruiting

• Seek advice from teams who have experience in studying the populations of interest– Involvement of community leaders throughout all stages of the

project– Same ethnicity research officers if possible– Personalsied and face-to-face mechanisms for recruitment – Sensitivity to linguistic, gender, religious and other cultural

considerations– Recognising that the economic burden of involvement with

research falls disproportionately on the poor– Appeal to the altruistic nature of the community

• When planning a study, agree and make explicit issues to do with nomenclature and coding, analysing and reporting of ethnicity data

Short-term

• Need for greater clarity on the contexts/populations/subjects in which representative, boosted and ethnic specific recruitment is important

• Recognise that recruitment is only one-third of the battle. We also need to make progress on:– analysis and – reporting considerations

• Develop, pilot and trial interventions that facilitate the wider research community to recruit these ‘hard to reach’ populations and efficiently analyse and effectively report ethnicity data

Longer-term

Conclusions

Summary• The main barrier to recruitment lies with the academic

community • There are pockets of expertise in recruiting minority ethnic

people• Researchers in general are however:

– Concerned about their understanding of these communities and their skills and competence in effectively interacting with them

– Concerned about costs– Worried about the additional ‘hassle’ of dealing with difficult groups– Not convinced of the importance of the issue

• In the short-term, researchers should seek advice of teams with expertise in the populations of interest

• In the longer-term, there is need for methodological work to:– Identify and agree the areas/contexts in which ethnicity really matters– Consider the relevant arguments for and against representative, boosted and

ethnic-specific sampling– Develop and achieve consensus on standards for data collection, analysis

and reporting– Develop, pilot and trial interventions for facilitating recruitment of minority

ethnic people

Acknowledgements

• Raj Bhopal• Chris Griffiths• Laila Halani• Joe Kai• Toby Lasseron• Mark Levy• Gopal Netuveli• Martyn Partridge• Sukhmeet Singh Panesar• Asthma UK