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

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?

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

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

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

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

Newcastle Heart Project: Smoking prevalence (%)

Indian Pakistani Bangladeshi European

Men (South Asian combined, 33%

14 32 57 33

Women(South Asian combined, 3%)

1 5 2 31

Comparison of some key risk factors in Indians in the Punjab and their siblings (Bhatnagar, 1995) Serum cholesterol (mmol/l) 6.5 4.9

H.D.L. cholesterol (mmol/l) 1.1 1.2

Systolic blood pressure (mmHg) 146 132

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

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

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

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?

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

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

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)

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)

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

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.

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.

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

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

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