Inclusion and exclusion of ethnic minority populations in health research: effect on equality & equity

1. Inclusion and exclusion of ethnic minority populations in health research: effect on equality & equity Raj Bhopal CBE, DSc (hon), MD, MPH, FRCP(E) Professor of Public Health, University of Edinburgh & Chairman, Steering Committee of the National Resource Centre for Ethnic Minority Health

2. Questions • What is the state of research in ethnic minority populations, particularly in relation to effectiveness of interventions? • What principles can we adopt in the light of gaps? • What messages are there for future research?

3. Policy Consensus • Policy requires us to integrate the needs of minority ethnic communities within the broader health and health care agendae.g. in Scotland “We will require NHS Boards to ensure that NHS staff are professionally and culturally equipped to meet the distinctive needs of individuals and family groups from ethnic minority communities” • Race Relations Amendment Act 2000 • The DH and Scottish Executive action plans (Fair for All HDL 2002) • Inequalities are centre stage

4. Inequalities and inequities in health and health care • the concepts of migration, ethnicity and race imply major differences in environment and culture, and some differences in biology, which inevitably • lead to inequalities in health, that are • easily demonstrated by variables such as country of birth, ethnicity and race, so • we need research, information, plans and actions to tackle such inequalities

5. Why should we have data by ethnicity ? • establish the extent of health inequalities and inequity in health service provision • choose between interventions i.e. set priorities • monitor impact of efforts to reduce these inequalities • demonstrate response to RRA 2000, Fair for All etc • But - incredibly little data

6. What would we lose without such data? • Cardiovascular diseases are dominant causes of death in UK South Asian populations-even exceeding of the incredibly high levels in the UK as a whole • We do not properly understand what is going on • Smoking is the number one public health problem in Europe • Smoking prevention and cessation programs require data • Newcastle heart project data and the Punjabi siblings study provided vital insights

7. Newcastle Heart Project: Smoking prevalence (%)

8. Comparison of some key risk factors in Indians in the Punjab and their siblings (Bhatnagar, 1995)

9. Lessons from these data • Such important differences cannot be ignored • Such differences cannot be quantified except by using the concepts of migration, race or ethnicity • Minority ethnic groups are extremely heterogeneous • Change occurs tremendously fast after migration • We need both descriptive and experimental data-so we understand the burden of the problem and what to do about it

10. Routine vital statistics and other data: longer term solutions • clear policy commitment but information poor • country of birth is widely used as a substitute for ethnic group • high-quality, complete, routine ethnic coding in routine information systems is some way off • recording ethnicity on birth and death certificates-under debate

11. Routine vital statistics and other data: retrospective coding of ethnicity project • Edinburgh University/ISD/GROS project has shown how the information gap can be filled e.g. • using probability matching techniques to match hospital discharge to census records • name searching • modelling • the information desert can be made to bloom! • http://www.chs.med.ed.ac.uk/phs/research/Retrocoding%20final%20report.pdf

12. Primary research: evidence base for effectiveness in minority ethnic health • The question of what works is problematic • The placebo-controlled, randomised, double blind trial provides the most solid evidence for effectiveness of initiatives • These trials are difficult to conduct, particularly for complex interventions. • Do we need evidence from such studies to recommend an initiative in minority ethnic groups? • If so, do such studies exist? • What do we do when there are no specific relevant studies?

13. Evidence to underpin interventions in ethnic minority populations • North-south gap in research • Echoed in ethnicity gap • Work on ethnicity and health is small-scale • Ethnic minority groups generally invisible in large-scale studies, particularly cohort studies and trials • Such studies underpin interventions

14. Evidence of effectiveness of interventions by ethnic group • Yet, ethnic minorities groups are willing participants in trials with consent and response rates on a par with the population as a whole • Costs are higher for recruitment

15. Evidence to underpin interventions by ethnic group: studies showing the gap 1 • Ranganathan and Bhopal showed that while 15 of 31 North American cardiovascular cohort studies provided data by ethnic group, the corresponding figures in Europe were zero out of 41 (PLoS Jan 3 2006, http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0030044) • Bartlett and colleagues reported that eight of 47 trials on statins were specific about ethnicity-all eight were USA based (Heart 2003; 89:327-8)

16. Evidence to underpin interventions by ethnic group: studies showing the gap 2 • Hussain-Gambles and colleagues have shown very low participation of South Asian populations in six trials led by the Clinical Trials Research Unit in Yorkshire (HTA report 2004; 8: number 42, and BMJ 2003; 326:1244-5) • Sheikh and colleagues examined reporting of ethnicity in154 trials-23 of 59 trials in the USA reported ethnicity (39%) compared with seven of 95 in Europe (7%) (BMJ 2004; 329: 87 - 88)

17. Evidence base for health interventions in the field of minority ethnic health • A focused research programme is needed • Studies on general populations ought to include people from minority ethnic groups -in time meta-analyses will be possible • Building up a database of this kind will be a multi-billion pound endeavour and will take many years • This will need to be an international exercise • Meantime, we need to use principles

18. Principles for health interventions involving ethnic minority populations 1 • All health initiatives are relevant to minority ethnic groups • The needs of minority groups should be met simultaneously with the rest of the population. • If an intervention works generally try it in ethnic minority groups. • Make modifications to adapt the intervention for minority ethnic groups. • Involve minority health professionals in the teams developing and implementing health initiatives.

19. Principles for health interventions involving ethnic minority populations 2 • For simple interventions, e.g. folic acid supplementation for pregnant women to prevent congenital abnormalities, effectiveness will probably be transferable across ethnic groups. Evaluate by monitoring uptake and outcome • If intervention is complex e.g. will brief advice from the general practitioner help Bangladeshi smokers quit? Ask the question in the context of a formal trial. • At least, research how to modify interventions to make them cross-culturally effective.

20. Conclusions • Health initiatives must cater for the ethnic minority populations with work of equal potential effectiveness and sensitivity. • To do otherwise promotes inequality, maintains inequity and is unethical and institutionally racist, if not illegal • We need institutional structures including pro-active strategies and stringent requirements of researchers

21. Conclusions 2 • Data are needed for increasing awareness and stimulating policy and action to improve the health of ethnic minority groups • There is a particular gap in the evidence base showing effectiveness of interventions by ethnic group

22. Conclusions 3 • Legislative and policy imperatives are now integrated and symbiotic • Ethnicity and health work is embedded within wider diversity and social justice goals • The research community has an infrastructure within which to collect evidence • To improve health in local communities needs research • Research can help ethnic minority groups to move from the shadows and participate in a vibrant, healthy, multi-ethnic society as the following pictures illustrate