Representing BAME individuals in Covid-19 research

Researchers must ensure people of Black, Asian and Minority Ethnic (BAME) groups are proportionately represented in Covid-19 studies, according to scientists from UK and USA.

Previous studies show that people of BAME groups are under-represented in many research projects despite research showing that in many cases, people from these groups are more likely to be affected by the conditions being researched.

A paper published in The Lancet today by researchers at the Universities of Aberdeen, Cambridge and Leicester, UK and Emory University in the USA, looks in detail at the inclusion and recording of ethnicity in research studies.

Covid severity and deaths

Global evidence shows that Covid-19 is more likely to be severe in people who are older, in men, people who are obese, poorer and those who have more than one underlying condition.

Early data also suggested that people of BAME groups in the UK and Black, Hispanic and Native American groups in the US are disproportionately affected by severe Covid-19 complications and death.

In the UK 33% of patients critically ill with confirmed COVID-19 in intensive care came from BAME groups despite comprising around 13% of the UK population.

The picture is similar within NHS staff, where 21% of staff are from BAME backgrounds but account for 63% of Covid-19 related deaths.

BAME groups under-represented

The paper highlights previous studies that show BAME individuals are under-represented in research.

For example, in the UK, type 2 diabetes is disproportionately prevalent in South Asians who also have poorer long-term outcomes but in a review of 12 trials, the mean South Asian involvement was 5.5% despite South Asians representing 11.2% of the UK type 2 diabetes population. Four of the 12 studies didn’t even report ethnicity. Similar disparities were found in US studies.

Societal factors including language difficulties, lack of research awareness or mistrust of research, stigma, cultural values and beliefs about research, poor engagement from researchers and general inaccessibility to research in deprived areas are all possible barriers to participation.  There is little tailoring of recruitment approaches by researchers to support BAME involvement.

The paper concludes by highlighting best practice toolkits that are available to researchers to enable them to engage, inform and recruit BAME participants to research.

Professor Shaun Treweek from the Health Services Research Unit at the University of Aberdeen said: “Covid-19 is shining a spotlight on a problem that has been with us for a long time.  Results from Covid-19 research must apply to everyone in the community who will be a candidate for treatment or prevention, and people of BAME groups – often overrepresented in the toll of the disease –should be an integral part of that effort.

“Omission has consequences: people could miss out on important benefits, or not be spared harms, if research fails to engage all those who could benefit: there is no guarantee that results will apply to populations not included in the research.

“For BAME involvement in research to improve, thinking about participants’ ethnicity when designing and reporting research needs to become as routine as thinking about their age and sex.  Researchers, research funders, public health and policy agencies all have a duty to ensure that concerted action is taken for research studies to serve and represent the whole community not just part of it.”

Professor Khunti, who is a Professor in Primary Care Diabetes and Vascular Medicine at the University of Leicester and leads the Centre for BME Health, and first highlighted the issue regarding the disproportionate impact of Covid-19 on BAME populations in the UK, said: “The findings from this paper not only support previous studies but also heighten the need for urgent action to address this underrepresentation of BAME people in research.

He added “To achieve this, researchers need to breakdown the barriers to make it easier for people from BAME backgrounds to access research.”