Ensuring ethnic diversity in COVID-19 research
People from black, Asian and minority ethnic (BAME) groups are disproportionately affected by coronavirus infection, so it’s imperative that they’re included in COVID-19 research. Professor Kamlesh Khunti and Professor Azhar Farooqi from the Centre for BME Health share some tips on how to successfully involve people from BAME backgrounds in your research.
Ethnic inequalities in health and social care outcomes have been well documented in published research. This disparity is even more stark in the COVID-19 pandemic, where it has become clear that people from black, Asian and minority ethnic (BAME) groups are disproportionately affected by coronavirus infection.
Yet BAME groups are much less likely to be represented in research studies. The reasons for this are complex, with some of the barriers arising out of cultural differences, health literacy, language and accessibility, as well as stigma regarding some health conditions.
And data on participants’ ethnicity is still not being routinely collected in COVID-19 studies, meaning that there is no evidence available that this research is inclusive and representative of all populations.
Encouraging research participation
At Centre For BME Health, which is supported by the NIHR Applied Research Collaboration East Midlands and the NIHR Leicester Biomedical Research Centre, we have partnered with the NIHR to make sure that people from BAME groups are included in COVID-19 research.
Our first move was to launch a public campaign to raise awareness of the importance of taking part in research among people from BAME backgrounds. We partnered up with British comedian Omid Djalili, alongside Whoopi Goldberg and Sanjeev Bhaskar, to create a video urging people to take part in COVID-19 research.
The video has been watched more than 2,500 times on YouTube plus a further 150,000 times on social media. And Omid has taken our plea to the national media, appearing on Good Morning Britain to encourage people to take part in research.
Supporting researchers with inclusive research
However, ensuring full representation of different ethnic groups in COVID-19 research isn’t just a case of encouraging patients to take part. There is also a responsibility on the part of researchers and research delivery staff to promote inclusion and engagement of BAME groups at all stages in health and care research.
To assist researchers in changing how they design and conduct COVID-19 research, we’ve developed a series of videos for health and social care researchers, to offer tips and advice on designing and delivering research that is sensitive to and inclusive of people from BAME groups. We also hope they’ll help research staff understand the need to record ethnicity data and recruit people from BAME backgrounds, to ensure that participants in research are representative of the totality of the population.
Understanding, communicating with and interacting with people from across cultures is another important aspect of undertaking research. This is known as cultural competency, and is a key aspect of undertaking research with BAME groups. This subject is explored in the second of our videos.
To support the practical application of this advice, we’ve also produced checklist to help researchers ensure all areas of their research are equality focused.
These new resources can be used alongside the centre’s existing toolkit for increasing participation of BAME groups in health and social care research, produced with De Montfort University and local BAME communities. This toolkit shares best practice and provides researchers with a framework on how to improve the participation of BAME groups.
Hearing straight from patients and the public
We also wanted to find out directly from people from BAME groups about what the barriers in engagement in research were, and how they can be addressed. So we engaged with patients and members of the public from local BAME groups to produce a third video, where they share thoughts and suggestions about taking part in COVID-19 research.
The people we spoke to gave their perspectives on how to meaningfully involve BAME groups in research, such as keeping participants informed during and after the research study. The key message that came through from everyone we talked to was that people from BAME groups need to be engaged in a research project from the very beginning, in the spirit of true collaboration and partnership.
We would like to thank those people from local BAME groups who participated in this work during the COVID-19 pandemic, using new approaches to collaborating such as Zoom and WhatsApp. In addition, we would like to extend our appreciation for their commitment, enthusiasm and passion to participating in the videos while maintaining social distancing.
Acting together to improve representation
Ensuring that people from BAME groups both take part in research and have a voice in how it is designed is absolutely vital. This will lead to research being more relevant and, most important of all, more likely lead to a change in how health and care services are provided. In effect, to make a real difference on the ground.
Given that COVID-19 has such a serious impact on people from BAME backgrounds, this imperative is all the more important during the current pandemic. I’d encourage you to watch these videos and share them with your research colleagues so we can collectively improve the representativeness of COVID-19 research and ensure the results will benefit everyone in our society.
Professor Kamlesh Khunti
Director, Centre for BME Health
Director of the NIHR Applied Research Collaborations East Midlands
Professor of Primary Care Diabetes and Vascular Medicine, University of Leicester
Professor Azhar Farooqi OBE
Clinical Director, Centre for BME Health
Lead, Ethnicity and Health Inequalities theme, NIHR Applied Research Collaborations East Midlands
Honorary Professor, University of Leicester
The NIHR has partnered with the Centre for BME Health to offer tips and advice on designing and delivering health and care research that is sensitive to and inclusive of people from BAME groups.
We’ve collaborated on the following tools for researchers:
- Three videos with an overview of how to ensure ethnic diversity in research, some specific advice on cultural competency, and tips direct from patients and the public
- A checklist to ensure all areas of research are equality focused
These new resources can be used alongside the centre’s existing toolkit for increasing participation of BAME groups in health and social care research.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.