Crawshaw, AF

Etti, M

Fofie, H

Goldsmith, LP

Hargreaves, S

Razai, M

PubMed

St George's Online Research Archive

EClinicalMedicine 36 (2021) 100903Contents lists available at ScienceDirectEClinicalMedicinejournal homepage: https://www.journals.elsevier.com/eclinicalmedicineCommentaryEthnic minority and migrant underrepresentation in Covid-19 research:Causes and solutionsMelanie Ettia, Hazel Fofiea, Mohammad Razaib, Alison F. Crawshawc, Sally Hargreavesd,Lucy P. Goldsmithe,*a St George’s University of London, London, UKb Primary Care, St George’s University of London, UKcMigrant Health and Participatory Research, St George’s University of London, London, UKd Global Health, St George’s University of London, London, UKe Global Health, St George’s University of London, London, UKA R T I C L E I N F OArticle History:Received 28 April 2021Accepted 28 April 2021Available online xxxThe Covid-19 pandemic has highlighted the longstanding underrepresentation of ethnic minorities in clinical research  includingmigrant populations [1]. Ethnic minorities in the UK are at signifi-cantly greater risk of severe disease and death from Covid-19 thantheir White counterparts [2]. Similarly, migrants in high-incomecountries with Covid-19 have been identified as being at potentiallygreater risk of hospitalisation and death than non-migrants [3].Despite this, a recent National Institute for Health Research (NIHR)report found ethnic minorities constitute only 9¢26% of participantsin UK Covid-19 studies, below their representation in the generalpopulation (13¢80%) [4].The NIHR has stated that Covid-19 research needs more ethnicminority participants to ensure the research is representative of theUK population. The inclusion of these groups in Covid-19 vaccine tri-als is particularly pertinent, with vaccine uptake being lower amongethnic minority groups than White people in the UK despite theirincreased risk [5]. Some migrant group’s concerns around the vaccineare due to their lack of inclusion in the clinical trials, highlighting anurgent need to understand and address the reasons underlying thesedisparities in Covid-19 research participation [6].Reasons for the underrepresentation of ethnic minority groups inCovid-19 research are poorly elucidated but are likely due to a combi-nation of personal and structural factors. Socio-political factors mayinclude social deprivation limiting access to health services, and sub-sequently, participation in  and awareness of  health research.Participant-related factors may include language and cultural bar-riers, and mistrust towards researchers and research institutions.Fear, mistrust and access barriers are the effects of powerful* Corresponding author.E-mail address: lgoldsmi@sgul.ac.uk (L.P. Goldsmith).https://doi.org/10.1016/j.eclinm.2021.1009032589-5370/© 2021 The Author(s). Published by Elsevier Ltd. This is an open access article undupstream factors including structural racism, marginalisation andethnic exclusion. Previous studies have noted that a good researcher-participant relationship is a key facilitator of their participation [7].Lack of ethnic minority participation has also been linked to racialdiscrimination and previous negative healthcare experiences [5]. Aqualitative study in the UK seeking the views of ethnic minoritiestowards participation in Covid-19 vaccine trials identified a range ofbarriers including concerns around attending hospitals, lack of sup-port if problems arose and language barriers between themselvesand research staff, despite agreement that this research was neces-sary [8].Factors relating to research design and approach taken byresearchers, including the omission of ethnicity from covariate dataand non-inclusive recruitment strategies, are also likely to impactnegatively on recruitment from these communities. As of 27th March2021, only 1¢43% of US-based studies investigating Covid-19 regis-tered on Clinicaltrials.gov were collecting data about ethnicity,highlighting how this problem continues to go overlooked. Anotherreview examining ethnic minority research participation found thatthe number of individuals from minority groups actually invited byresearchers to participate in research was disproportionately smallcompared to their representation in the wider population [9]. Strate-gies to increase ethnic minority representation in medical researchmust seek to tackle the root causes of underrepresentation includingsystemic racism, racial discrimination and access barriers.In-depth cross-sectoral qualitative research is urgently needed tobetter understand the barriers hindering the involvement of peoplefrom ethnic minority communities in clinical research and developrobust solutions. Initiatives such as the INCLUDE project, which aimsto promote the inclusion of underserved communities in clinical tri-als, are forming the basis for this much needed work and may providefresh insight and useful action points [10]. Researchers and policymakers should be educated and supported to prioritise equitableaccess to research participation for ethnic minorities and migrants,particularly for conditions that disproportionately affect them. Strat-egies for overcoming participation disparities should not be ad hoc,but rather, part of a policy framework underpinned by Principle 13 ofthe Declaration of Helsinki. Practical solutions for increasinger the CC BY license (http://creativecommons.org/licenses/by/4.0/)2 M. Etti et al. / EClinicalMedicine 36 (2021) 100903recruitment could include translating participant information into lan-guages other than English, using diverse recruitment strategies to ensurestudy information and invitations reach potential participants amongethnic minority and migrant communities, and developing communityengagement programmes to dispel rumours and misinformation whichmay erode trust in these studies [8]. Addressing factors connected to eco-nomic disadvantage (which may disproportionately affect certain ethnicminority groups) will also be needed, including reimbursement for child-care costs and travel expenses [9]. Being clear about the potential bene-fits of participation will be important, alongside consideration of culturaland religious schedules [8].The NHS Race & Health Observatory, which has responded to thespecific health and wellbeing of ethnic groups in the UK, should nowalso focus on the equitable inclusion of these groups in Covid-19 clin-ical research and trials. Ultimately, we should ensure meaningful par-ticipation is placed at the heart of public health interventionsresearch, with beneficiaries of the research included in every stage ofthe research pathway [6].Declaration of Competing InterestThe Authors have nothing to disclose. The views expressed arethose of the author(s) and not necessarily those of the NIHR or theDepartment of Health and Social Care.References[1] Gill PS, Redwood S. Under-representation of minority ethnic groups in research-call for action. Br J Gen Pract 2013;63(612):342–3.[2] Public Health England. Disparities in the risk and outcomes of COVID-19 Availablefrom: https://www.gov.uk/government/publications/covid-19-review-of-dispar-ities-in-risks-and-outcomes[3] Hayward SE, Deal A, Cheng C, Crawshaw AF, Orcutt M, Vandrevala TF, et al. Clini-cal outcomes and risk factors for COVID-19 among migrant populations in high-income countries: a systematic review. medRxiv 2020. doi: 10.1101/2020.12.21.20248475.[4] NIHR research ethnicity data provides insight on participation in COVID-19 stud-ies [Internet]. [cited 2021 Mar 16]. Available from: https://www.nihr.ac.uk/news/nihr-research-ethnicity-data-provides-insight-on-participation-in-covid-19-studies/26460[5] Razai MS, Osama T, McKechnie DGJ, Majeed A. Covid-19 vaccine hesitancy amongethnic minority groups. BMJ 2021;372:1–2.[6] Crawshaw AF, Deal A, Rustage K, Forster AS, Campos- I, Vandrevala T, et al. Whatmust be done to tackle vaccine hesitancy and barriers to COVID-19 vaccination inmigrants? J Travel Med 2021. doi: 10.1093/jtm/taab048.[7] Schmotzer GL. Barriers and facilitators to participation of minorities in clinical tri-als. Ethn & Dis 2012;22(2):226–30.[8] Ekezie W, Czyznikowska BM, Rohit S, Harrison J, Miah N, Campbell-Morris P, et al.The views of ethnic minority and vulnerable communities towards participationin COVID-19 vaccine trials. J Public Health 2020:1–3.[9] Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, et al. Areracial and ethnic minorities less willing to participate in health research? PLoSMed 2005;3(2):e19.[10] Witham MD, Anderson E, Carroll C, Dark PM, Down K, Hall AS, et al. Developing aroadmap to improve trial delivery for under-served groups: results from a UKmulti-stakeholder process. Trials 2020;21:694.

Ethnic minority and migrant underrepresentation in Covid-19 research: Causes and solutions

Etti, M.

Fofie, H.

Razai, M.

Crawshaw, A. F.

Hargreaves, S.

Goldsmith, L.

City Research Online

http://openaccess.sgul.ac.uk/id/eprint/113296/1/1-s2.0-S2589537021001838-main.pdf

Ethnic minority and migrant underrepresentation in Covid-19 research: Causes and solutions

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