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Flying the flag for ethnic minority participation in research

By Professor Kamlesh Khunti 

Every person deserves access to high-quality health care. It is a human right. Ethnicity should not make a difference, it really should not, but unfortunately there are still major challenges we need to overcome to reduce health inequalities.

According to a study published in June 2020, of the 1,518 COVID-19-related studies then registered on, only six collected data on ethnicity. This despite the role of ethnicity becoming apparent very early in the pandemic.

The argument is simple, for us to move close to health equality for all people from ethnic minorities, we need to ensure there is a sea change in awareness and promotion and access and, ultimately, participation of people from all backgrounds in research. This is important because there is currently a huge under representation of people from ethnic minorities in research data – data which is used to power new medical advances, innovations and treatments.

At both NIHR ARC East Midlands and the Centre for Ethnic Health Research, we are working tirelessly to address this. Here is a sample of our work which aims to increase ethnic minority participants in research:

Celebrity campaign

Celebrities Omid Djalili, Whoopi Goldberg and Sanjeev Bhaskar joined forces last summer as part of an appeal led party by our team to encourage participants to take part in COVID-19 research to help establish why people from ethnic minority populations are at greater risk from coronavirus. They urged people from ethnic minority backgrounds to join coronavirus research studies in a bid to help find the reasons behind the link.

Speaking on the video compiled to support recruitment, Omid Djalili said: “The sooner we do it the more lives we can save. Now. Thank you.”

INCLUDE Ethnicity Framework

ARC East Midlands contributed to the INCLUDE Ethnicity Framework released last autumn, which provides researchers with a blueprint for ensuring involvement of all ethnic groups in scientific studies

It was part of a group of projects which formed part of a rolling call for research proposals on COVID-19, jointly funded by UK Research and Innovation and National Institute for Health Research (NIHR) in response to the pandemic.

Professor Shaun Treweek is Professor of Health Services Research in the Health Services Research Unit at the University of Aberdeen, and leads the Trial Forge initiative, which has led the development of the framework.

He said: “This is a tool that trial designers together with patient and public partners can use to make sure they think about factors that affect the involvement of all ethnic groups, such as disease, culture, the treatment being tested and trial information and procedures. 

“It will also help people interpreting and reporting all trials, including COVID-19 trials, to make judgements about the applicability of trial results to all communities. This is particularly important for ethnic minority groups, which are very often under-represented in, and under-served by, health research.”

Willingness to take part in COVID-19 vaccine trials report

We have also played a crucial part in a survey in the East Midlands conducted to understand more about attitudes towards vaccine research and how they differ across different communities.

According to the results, people from white communities were more likely (76%) to say that they would consider participating in research to find a vaccine than those from Asian (53%) and black (38%) communities.

It is essential that vaccines work effectively for people from all backgrounds, and the results of this survey are helping us to better understand the different motivations and barriers that can affect participation in research. We will be using the findings to encourage all research sites within our region and beyond to ensure that research is as inclusive as possible.

Perceptions of COVID-19 vaccine studies among ethnic minorities

The public perceptions of coronavirus vaccine trial research within ethnic minority and vulnerable communities were captured in an ARC East Midlands report.

The NIHR Clinical Research Network has established a COVID-19 Vaccine Research Delivery Group. The role of this group is to coordinate resources and intelligence to deliver these new COVID-19 vaccine studies across the UK. 

As part of this work, the Centre for Ethnic Health Research undertook this community consultation to support our understanding and thus delivery of the COVID-19 vaccine studies.

Lancet article exploring COVID-19 and ethnicity

Along with Professor Shaun Treweek, from Aberdeen, Professor Nita Forouhi, from Cambridge, and Dr Venkat Narayan, from Atlanta, America, I wrote a Lancet article examining under presentation of ethnic minorities in research.

Following an examination of the evidence, we found that the reasons for under-representation of ethnic minority groups in research are complex and could be attributable to hesitancy on the part of participants, lack of inclusion by health-care staff or researchers, and other socioeconomic factors and entrenched structural inequalities. 

We concluded that: “Ensuring research is culturally and linguistically accessible and inclusive requires the commitment and resources of researchers from the start and the resulting increase in costs for these studies will need to be considered by the funders.”

Encouraging research participation

The Centre for Ethnic Health Research partnered with the NIHR to make sure that people from ethnic minority groups are included in COVID-19 research. The centre is playing a kay part in this campaign and is featured on the NIHR website

Supporting government in diversity and ethnicity research

The UK Government called on the Centre for Ethnic Health Research to improve diversity and inclusion.

The Department of Health and Social Care laid out its vision for the future of clinical research delivery across the nation and it included the Centre. As part of its promise, it has stated it will work closely with Centres of Excellence such as the Centre for Ethnic Health Research to ensure there will be “more support for research in more diverse and under-served communities”.

Conclusion: join our campaign for change

I hope you will agree, the case is compelling, we need change.

So, in support of the NHIR’s 2021 Be Part of Research campaign, we urge all stakeholders to join our broad campaign to reduce health inequalities by increasing the participation of people from ethnic minorities in research studies.

Everyone can do their bit, researchers should now make use of the INCLUDE Ethnicity Framework outlined above, community leaders can be more vocal on this issue and health and public health leads also need to take on this important message.

Professor Kamlesh Khunti 

National lead for ethnicity and diversity for the NIHR Applied Research Collaborations in the UK 

Director of NIHR ARC East Midlands

Director of the Centre for Ethnic Health Research

Co-Director of the Leicester Diabetes Centre

Published on: 3 Jun 2021