by Dr Edward Oloidi

Research in the United Kingdom is increasingly urged to be more inclusive and also better able to inform the development of policies and practices that are sensitive to the UK’s multi-ethnic population (Etti et al., 2021; Salway et al., 2009). The National Institute for Health Research added to this voice in a recent report, it emphasised the need for more Black, Asian and Minority Ethnic (BAME) participant inclusion in research to ensure that studies are representative of the UK population (NIHR, 2021).   

Demands for a better understanding of ethnic minorities’ uptake, experience, and outcomes in research (Shirley et al., 2020; Pan et al., 2020; Mathur et al, 2020) was made evident by the disproportionate impact that Covid-19 has had on BAME communities (Raisi-Estabragh et al., 2020).

Research exploring ethnic inequalities and risk of exposure to Covid-19 suggests that intersecting factors underpinned by racism and structural discrimination may have influenced higher infection rate amongst BAME communities (Ethnicity sub-group of the Scientific Advisory Group for Emergencies, 2020; Sze et al., 2020). Structural racism includes many factors such as poorer economic status, living arrangements, and less opportunities to work from home (Mathur, et al., 2020; Sze et al., 2020).  

The unequal power relations and beliefs generated by perceived experience of exclusion and maltreatment by the system often result in people from BAME communities feeling stigmatised, discriminated, and marginalised (Flores et al., 2021; Sze et al., 2020). These in turn may lead to people from minority ethnic background feeling mistrustful, and less confident about following public health measures including undertaking a covid-test or participating in covid related research (Sze et al., 2020).

Likewise, people from BAME backgrounds may feel side-lined in and by research. The lack of representation of BAME groups in research (Chastain et al., 2020) perhaps indicate a history of research being ethnocentric and exclusive. It is also possible that BAME group’s experience of inequities directly influence their unwillingness to engage with public services and a refusal to participate in research (Sze et al., 2020).

In Wales, the government has placed a strong emphasis on a ‘more inclusive and equal Wales’. Distinctive Welsh policies emphasise principles like inclusion, equality, rights independence, empowerment, control, and partnership (for instance, Social Services and Wellbeing (Wales) Act, 2014 & Wellbeing of Future Generations Act, 2015) to address inequalities (Improving Lives supports Prosperity for All, 2018, p.1). From a research perspective, this means focusing specifically on such issues and conducting more research that is reflective of the racial, ethnic, and cultural composition of our society (Race Equality Action Plan for Wales, 2021, Wellbeing of Future Generations (Wales) Act 2015). However, there may be several challenges in meeting these successfully. Some of these are highlighted below.

Researchers may need to be more aware of the inequalities that exist within our communities and how these shape the experiences and perspectives of people. These should drive our research agenda.  At the same time, how people from Black and Minority Ethnic groups might be recruited into research studies may also be problematic. A recent study examining the impact of Covid 19 on people with learning disabilities in UK / Wales, for example, found it extremely difficult to recruit participants from BAME communities despite a desire to do so.

Discussion amongst health and social researchers at USW led to a view that these key challenges should not impede developing focused and inclusive research.  In light of these discussions and experiences, it is timely to critically appraise the current focus of research within PRIME and to examine the barriers and facilitators to improved ethnic minority communities’ participation in research.

To help develop capacity and sensitivity to the issues raised above, some members of PRIME@USW are currently taking part in a discussion with Colleagues from Health and Care Research Wales. The focus is to discuss ideas to support ways of improving the representation of BAME groups at all levels of research. It was agreed that one approach would be to develop a public involvement group at USW that would help towards developing more inclusive and focused research.  

This group could meet on a regular basis (rather than being brought together for a specific project) and would advise PRIME@USW on the development, conduct and dissemination of all research. The proposed model would be similar to that utilised by the Teaching and Research Advisory Group (a group of men and women with learning disabilities that have been meeting monthly at the university for 18+ years).

By taking a proactive and longer-term approach, it is hoped that the following aims could be achieved:

• Explore experiences amongst people from ethnic minority communities in Wales concerning facilitators and barriers to their engagement in research
• Identify what needs to be done to overcome barriers for potential participants to engage in future studies
• Ensure that the views and experiences of people from Black and Minority Ethnic Groups inform all stages of the research process.
• Evaluate outcomes using measures such as - the number of research studies with a BAME focus, the number of people from BAME communities taking part in research etc.

 

References

Chastain, D.B., Osae, S.P., Henao-Martínez, A.F., Franco-Paredes, C., Chastain, J.S., Young, H.N., (2020) Racial disproportionality in Covid clinical trials. N Engl J Med. 383(9), pp. 1-11.

Melanie Ettia, Hazel Fofiea, Mohammad Razaib, Alison F. Crawshaw, Sally Hargreavesc, & Goldsmith, L.P. (2021) Ethnic minority and migrant underrepresentation in Covid-19 research: Causes and solutions. EClinicalMedicine, 36 (1), pp. 1-2.

Ethnicity sub-group of the Scientific Advisory Group for Emergencies (2020) (SAGE). Drivers of the higher COVID-19 incidence, morbidity and mortality among minority ethnic groups.  (accessed September, 2021).

Welsh Government (2018) Learning Disability Improving Lives Programme, Cardiff: Welsh Government https://gov.wales/sites/default/files/publications/2019-03/learning-disability-improving-lives-programme-june-2018.pdf (accessed 3/4/2020)

Flores, L. E., Frontera, W. R., Andrasik, M. P., del Rio, C., Mondríguez-González, A., Price, S. A., Krantz, E. M., Pergam, S. A., Silver, J. K. (2021) Assessment of the Inclusion of Racial/Ethnic Minority, Female, and Older Individuals in Vaccine Clinical Trials. JAMA Network Open. 4(2): e2037640. doi:10.1001/jamanetworkopen.2020.37640

National Institute of Health Research (NIHR) research ethnicity data provides insight on participation in COVID-19 studies [2020]. Available from: https://www.nihr.ac.uk/news/nihr-research-ethnicity-data-provides-insight-on-participation-in-covid-19-studies/26460

Pan, D., Sze, S., Minhas, J.S., et al., (2020). The impact of ethnicity on clinical outcomes in COVID-19: a systematic review. EClinicalMedicine; Volume 23, pp.1-8. doi.org/10.1016/j.eclinm.2020.100404  

Welsh Government (2021) The Race Equality Action Plan for Wales, Cardiff: Welsh Government [Online]. Available at: https://gov.wales/sites/default/files/consultations/2021-03/race-equality-action-plan-an-anti-racist-wales_2.pdf.(Accessed 1/10/2021)

Raisi-Estabragh, Z., McCracken, C., Bethell, M.S et al. (2020) Greater risk of severe COVID-19 in Black, Asian and minority ethnic populations is not explained by cardiometabolic, socioeconomic or behavioural factors, or by 25 (OH)-vitamin D status: study of 1326 cases from the UK biobank. J Public Health; 42(3), pp. 451–60.

Mathur, R., Bear, L., Khunti, K., & Eggo R. M. (2020) Urgent actions and policies needed to address COVID-19 among UK ethnic minorities. The Lancet, 396 (12), pp.1866-68

Sze, S., Pan, D., Nevilld, C.R., Gray, L.J., , Martin, A.M., ,c , Nazareth, J., b,c , Minhas, J.S., Divall, P., Khunti, K., Abrams, K.R.,, Nellums, L.B., Pareek, M. (2020) Ethnicity and clinical outcomes in COVID-19: A systematic review and meta-analysis.EClinicalMedicine, 29 (30), pp.1-17

Salway, S., Allmark, P., Barley, R, Higginbottom, G., Gerrish K & Ellison, G.T.H. (2009) Researching ethnic inequalities. Social research UPDATE, 58 (ISSN: 1360-7898), pp. 1-4. Department of Sociology, University of Surrey, Guildford GU2 7XH, United Kingdom.

Welsh Government, (2014). Social Services and Wellbeing Act. Cardiff: Welsh Government. [Online]. Available at: www.ccwales.org.uk/getting-in-on-the-act-hub/ (Accessed: 12 June 2017).

Welsh Government, (2015). Wellbeing of Future Generations Act. Cardiff: Welsh Government. [Online]. Available at: http://www.legislation.gov.uk/anaw/2015/2/contents/enacted (Accessed: June 2017).