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NIHR research ethnicity data provides insight on participation in COVID-19 studies

Published: 19 December 2020

  • Tens of thousands of people who identify as black, Asian or other minority ethnic (BAME) have volunteered to take part in UK COVID-19 research - but researchers highlight the importance of ensuring the ethnic diversity of study participants reflects the overall population
  • BAME communities are disproportionately affected by the pandemic - yet representation in studies is below the UK population average of 13.8%
  • For clinical trials to prove treatments and vaccines work for everyone - it’s essential that the ethnicity of participants reflects the wider population

The NIHR has today published data on participation in COVID-19 urgent public health research by ethnicity - highlighting the importance of people of all ethnicities being represented in studies to help tackle the disparities in the risk and outcomes from COVID-19 that BAME communities have experienced.

While the number of people from black, Asian and minority ethnic backgrounds participating in COVID-19 studies remains below the UK's population (13.8 per cent), the data also reveals that tens of thousands of people from these communities have so far taken part in this vital research.

With people from BAME backgrounds much more likely to experience poor health outcomes as a result of COVID-19 - including a higher risk of severe illness and death - researchers are keen to address these issues. They are appealing for more volunteers from ethnic minority communities to take part in urgent public health studies to help tackle these disparities in health outcomes.

Recruitment to COVID-19 urgent public health research by ethnicity

Data on the ethnicity of research participants are collected by researchers undertaking NIHR-supported, urgent public health studies into COVID-19. These include data from interventional studies assessing potential treatments; observational studies which provide important information around disease characteristics and infection rates; and trials investigating new COVID-19 vaccine candidates.

The NIHR analysed this ethnicity data, provided by a total of 622,978 participants taking part in studies across the UK: 

  • The percentage of ethnic minority participants involved in COVID-19 studies is 9.26 per cent (57,661 participants)
  • The proportion of ethnic minority participants involved in interventional studies is 9.58 per cent (4,743 participants)
  • Ethnic minority participants taking part in observational studies makeup 9.2 per cent (52,918 participants)
  • However, participation in COVID-19 vaccine studies is lower - with just 5.72 per cent of the total (1,509 participants) from an ethnic minority.

Read more about NIHR COVID-19 research

Disproportionately affected, yet under-represented in studies

Recent Office of National Statistics (ONS) COVID-19 estimates of mortality by ethnicity show that people from black, Asian and ethnic minorities in the UK are disproportionately affected by COVID-19 - with NIHR research showing people from BAME communities twice as likely to be infected and significantly more at risk of dying as a result of the disease compared with people from a white ethnic background. While UKR&I research shows one in three patients admitted to critical care with COVID-19 have been from an ethnic minority group, even though they make up only one in eight of the UK population.

Ensuring that participants in COVID-19 research proportionally represents the ethnicity of the wider population is vital to ensure that the new treatments and vaccines being investigated are effective for everybody - including people from different ethnicities.

Equally, to ensure representative population data on virus transmission and disease outbreak is being collected through observational studies - key data which could help to identify and address some of the health inequalities leading to the disproportionate impact on ethnic minorities - it is vital for more people from minority ethnic communities to take part.

Dr William van’t Hoff, Chief Executive of the NIHR Clinical Research Network said:

“While it is good news that many thousands of people from black, Asian and ethnic minority backgrounds are taking part in vital clinical research into COVID-19 - we still have more to do to ensure that the ethnicity of participants truly reflects the ethnic makeup of the country. It’s about ensuring the studies we support are really inclusive and representative of our population.

“The shortfall in participant numbers from BAME communities is particularly evident for COVID-19 vaccine studies - which is one of the key areas of research where it is most important that people from all ethnicities are adequately represented. This is so that we can be sure that these vaccines are equally safe and effective for people of all ethnicities.

“Clinical research is critical to advancing the science around COVID-19 and is the only way out of this pandemic. Taking part in research enables the development of safe and effective treatments, vaccines and better ways to control the disease - and doing so is overwhelmingly safe. As researchers and healthcare professionals, we would urge people from all ethnic backgrounds to ask about research, get their questions answered and consider taking part in studies where you are offered the chance to. Please consider whether you can take part and help us lessen the devastating impact that COVID-19 continues to have on BAME communities.”

A participant’s story

Transport for London worker, Yusuf, volunteered to take part in the Novavax COVID-19 vaccine study - after losing a close colleague and member of his family to the disease. When Yusuf heard about the chance to get involved in research for COVID-19 he immediately seized the opportunity.

Yusuf said: “Once you know someone who’s been affected by COVID-19, it makes a difference. Others were wary about vaccinations and I realised that people like me need to be seen to volunteer. If someone from the same community takes part, it’s one level of separation removed.”

When asked what he might say to others about taking part, Yusuf said: “Please do it as soon as you can, especially if you’re from the Caribbean community. We are a very small percentage of the volunteers, but we are one of the most affected groups for COVID 19; it’s essential any treatments are tested for us. We all need to step up. The African community needs to sign up to help the community, help London and help the country fight COVID-19.”

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