Research agenda for tackling inequalities related to migration and ethnicity in Europe

1. Research agenda for tackling inequalities related to migration and ethnicity in Europe Raj Bhopal, Professor of public health, Ethnicity and Health Research Group, Centre for Population Health Sciences, The University of Edinburgh

2. Migrating populations, 1990-2000 2000: 175 million; >4x increase from 1975 2050: 230 million Sources: Population Action International 1994, IOM 2003

3. Migration, Race &Ethnicity

6. Some words and concepts (simplified) • Ethnicity (subsuming race): The group you the long to, or are perceived to belong to, because of culture, ancestry, and physical features • Migrant: someone who leaves one country to take up residence in another • Inequality: difference • Inequity: a difference that is potentially unjust

7. Inequalities and inequities in health and health care • 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

8. Questions addressed in this presentation • Why is inclusion of migrant and ethnic minority populations in European population health research important? • What is the state of such research, particularly on effectiveness of interventions? • What principles and practice (special reference to lessons from Scotland) can we adopt given the gaps? • What messages are there for setting the future agenda for inequalities research in Europe?

9. Importance: Policy and Legal Consensus • Policy and law requires us to meet the health care needs of minority migrant and ethnic communities. • The driving force is the quest for equity • The duty is explicit on public bodies, but limited for private ones UK example • Race Relations Amendment Act 2000 • The DH and Scottish Executive action plans (Fair for All HDL 2002) • Research governance frameworks (e.g. DH 2001) • Scottish Strategy for Ethnicity and Health Research, 2009

10. Importance: research and data needs for public health • Establish the extent of health inequalities and inequity in health service provision • Choose between interventions i.e. set priorities • Monitor impact of interventions to reduce inequities and inequalities • Demonstrate response to laws and policies • But – little, though compelling, data

11. State of research: Main limitations (developed from Netto et al) • Limited strategic perspective (no explicit legal obligation, as in USA) • Research driven by • Interests of a few academics/institutions • Concerns of migrant and ethnic group voluntary organisations • Shortage of descriptive and evaluative research of health services relating to • Accessibility and use of health services Appropriateness of health services • Patterns of employment in the health service

12. State of research: Main limitations (developed from Netto et al) • Sparse ethnically disaggregated monitoring and morbidity data, death and birth certification • Sparcity of ethnically disaggregated data in large scale surveys • Shortage of major trials and cohort studies providing data by ethnic group and migration status www.scotland.gov.uk/cru/kdol/red/auditethnic-11.asp

13. State of research: Routine vital statistics and other data • Even with clear policy commitment routine complete, migrant and ethnic group coding in routine information systems is not achieved • Country of birth is widely used as a pragmatic substitute for migrant and ethnic group status • Recording migration status and/or ethnicity on birth and death certificates-debate is mostly stalled

14. State of research: evidence base for effectiveness of interventions • The placebo-controlled, randomised, double blind trial is the gold standard • These trials are difficult to conduct, particularly for complex interventions. • Do we need evidence from such studies in minority migrant and ethnic groups? • If so, do such studies exist? • What do we do when there are no specific relevant studies?

15. State of research: Evidence to underpin interventions-studies showing the gap • Ranganathan and Bhopal 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. Principles and practice: ideal to pragmatic • The ideal research would be inclusive, have high response rates, provide comparable data, collect information on various facets of ethnicity, adjust for confounding variables and be analysed and interpreted to advance science, improve health status and develop better health care. • In practice, many of these ideals will be sacrificed to make studies feasible

17. Principles and practice: recruitment • Ethnic minorities groups are willing participants in trials with consent and response rates on a par with the population as a whole once linguistic barriers are removed (Wendler PLoS 2006; Jolly et al BMC 2005) • Costs are higher for recruitment (Marquez et al, Journal Of Mineral And Bone Research 2003; Oakley et al 2003) • Costs are not ethically or scientifically acceptable as a sole and justifiable for exclusion.

18. Principles and practice: recruitment 2 “What is now needed is less blame directed at already marginalised people. Instead, those with the power to change the way in which research is conducted should translate the important insights provided by Wendler and colleagues’ study into significantly more invitations extended to minority ethnic and racial groups to participate in the research endeavour. “ (Aziz Sheikh PLoS Medicine 2006)

19. Principles and practice: Research Ethics • The general ethics of research are applicable to migrant and ethnic minority groups • Ethical codes are usually written following the abuse of minorities, e.g.Nuremberg Code • Ethical codes may need to be modified

20. Principles and practice: Ethical basis of research • Do no harm • Do good • Respect and Autonomy • Justice, fairness & equality • Inclusivity and participation • Informed consent and confidentiality

21. Principles and practice: Some examples of ethical modifications • person does not read – arguably, unethical ( waste of resources), to send written information. • Arguably, it is ethical to telephone or even call at the doorstep of such a person before writing • Head of the household or the whole family may decide on participation. Thus individual informed consent is not always workable. • Unethical to bypass migrant and ethnic minority groups in trials and cohort studies

22. Principles and practice: An Ethical Code for Researching ‘Race’, Racism and Anti-racism in Scotland (SABRE) • published in 2001 by the Scottish Association of Black Researchers, emphasising • social justice and human rights • commitment to anti-racism • empowering and actively including black and minority ethnic peoples’ perspectives. • addressing the complex and problematic nature of concepts of ‘race’, racism and ethnicity.

23. Principles and practice: An Ethical Code for Researching ‘Race’, Racism and Anti-racism in Scotland (SABRE) • ensuring research does not pathologize, stereotype or exploit • valuing diversity • acknowledging the power relations inherent in social research processes http://www.sabreuk.org/

24. Principles and practice: Scotland’s research strategy Health in our Multi-ethnic Scotland: Future Research Priorities http://www.healthscotland.com/uploads/documents/11136-Health%20in%20our%20multi-ethnic%20Scotland%20-%20full%20report.pdf

26. Principles and practice: Using census, place of birth, name search, data linkage • Compared with White Scottish men and women • all-cause mortality lower among those born in England and Wales, Pakistan, Bangladesh, India (men), China, and rest of world (Census and mortality) • South Asian’s incidence of heart attack higher but survival better (Census, hospitalisation and mortality by linkage)

27. Principles and practice: Using census, place of birth, name search, data linkage • Using name search In Tayside • utilisation of health care for South Asians with diabetes was equitable but key outcomes poorer • More work being done on cardiovascular disease, cancer, maternal & child health and mental health (http://www.cso.scot.nhs.uk/Publications/ExecSumms/Feb11/BhopalPH.pdf)

28. Principles and practice: Conclusions on Scottish research • Very little known about health status of migrant and ethnic groups due to lack of vital statistics • Little attention to evaluation of health promotion strategies • Little research on effectiveness of mental health services • Few of known findings acted upon • Even when data available, opportunities to analyse not taken

29. Principles and practice: future research in Scotland • Defining ethnicity – • Recommend using Scottish census classification • Surveys – sampling methods, numbers and response rates all important • Recommend all quantitative studies should ensure sample sizes are sufficient to produce accurate analyses • Questionnaires – need to ensure concepts are understood, meaning translated and sensitivities recognised • Recommend translations prepared with help of interpreters and validated before use

30. Principles and practice: future research in Scotland • Qualitative methods – • Commonly used and can provide many useful insights but need to be complemented with quantitative data. • Evaluations of interventions involving migrant and ethnic • essential but rare • only two in Scotland to date (Vit D and Khush Dil) and one in progress (PODOSA)

31. A research agenda for Europe: priorities for future research • Good ethnic coding of health information systems is essential • Recommend targets e.g. >80% by 2013 • Data linkage – considerable scope for further study • Recommend this work is prioritised • 3. Ethnically boosted health surveys • Recommend link to major research on standardised surveys in Europe

32. A research agenda for Europe: Priorities for future research • Coordinated research on major health problems • Recommend evaluations of interventions eg on heart disease, cancer, obesity, depression • Audit/evaluation of standards of local health and social care services • Recommend health services examine range and quality of services for migrant and ethnic minorities • Coordinating and monitoring research by strategy group

33. Conclusions 1 • Health initiatives, including research, must cater for the migrant and ethnic minority populations equitably • To do otherwise promotes inequity and is unethical if not illegal • We need European level and national institutional structures including pro-active strategies and stringent requirements of researchers • Ethics committees have a vital role to play in guiding researchers and funders

34. Conclusions 2 • Data are needed for stimulating policy and action particularly on effectiveness of interventions by migrant and ethnic group • Research can help migrant and ethnic minority groups to move from the shadows and participate in a vibrant, healthy, multi-ethnic society