Diversity in research participants: “It’s time to turn policy into action”

Experts from leading research organisations, including Medical Research Council and American Diabetes Association, are calling for action to increase the diversity of people taking part in research.

What is diversity in research participation?

Diversity refers to having a variety of differences and unique qualities among individuals. The characteristics of the people taking part in a research study should reflect the community the research is for. If this doesn’t happen, some groups of people are underrepresented, meaning the findings of the research may not be applicable to them. Researchers should actively strive to include a variety of individuals in their studies to promote fairness, inclusivity, and the advancement of science.

Why do we need diverse research participants?

Having diversity in research participants is essential for addressing the unique needs and experiences of different populations. Data from National Institute for Health and Care Research has found that UK areas with the highest prevalence of disease also have the fewest residents taking part in research. So, new drugs are often tested on healthier people who may not respond in the same way. Including people from a range of demographics in research produces more meaningful and applicable results and ensures ethical research practices with less bias.

Expert opinion

American Diabetes Association President of Health Care & Education, Janet Brown-Friday, has called for action to ensure clinical trials are representative of the population the drugs are being tested for. She has suggested making funding for clinical trials dependent on researchers designing their studies to actively recruit and include people from minority groups.

Medical Research Council makes policy change

In fact, Medical Research Council (MRC), a major funder of biomedical research, has done just that to become the first UK research funder to require their researchers to make diversity an essential part of their research. In June 2023, MRC announced that a requirement of receiving their research funding is to consider whether features such as sex, gender, age, ethnicity and socio-economic status are relevant to the studies they are running.

Find out more about MRC’s policy on diversity.

Barriers to taking part in research

According to research by NHS England, language barriers, accessibility and mistrust are the main reasons for underrepresentation in research. Published research from 2022 also cited the following barriers: limited awareness of opportunities to participate in research, fears about changes in standard therapy, breaking cultural norms/stigma, religion-related concerns and mistrust of clinical research.

Focus groups found that the concerns of people who identify as Black focused more on famous past instances of abuse from scientists and healthcare professionals. Janet Brown-Friday said: “The main barrier to making clinical studies more diverse is mistrust of the medical community. We must prove, through action, that we are, indeed, worthy of trust.”

How can researchers overcome these barriers?

As Janet said, it is the responsibility of researchers and institutions (such as pharmaceutical companies and universities) to build trust among underrepresented groups by authentically engaging with diverse populations. Participants in focus groups have said transparency is a key method of building this trust. That means researchers being open and honest about what the aims of the research are, why it’s being done, and what is involved in taking part.

The ELSA Study’s proactive approach

The ELSA Study, a research study co-funded by JDRF, is ensuring as many children as possible in the UK aged 3-13 have the opportunity to be screened for type 1 diabetes. The researchers are achieving this by partnering with community groups including Refugee Alliance, NISHKAM Centre (a Sikh faith-based organisation) and Ileys Community Association.

In total, 14% of participants in the ELSA study are of ethnicities other than White European, which is just shy of the 18% UK population total. While there is still work for the team to do to reach the same proportion as the UK public, it shows their partnerships with minority group organisations are having a positive impact on the diversity of their research.

JDRF’s commitment to diversity

Here are JDRF, we have a commitment to diversity, which includes our research funding.

CEO of JDRF International, Aaron Kowalski, said: “We know all too well that type 1 diabetes does not discriminate — it is a disease affecting all races and ethnicities. At the same time, we recognise that within the type 1 community, inequities disproportionately affect the health and wellbeing of diverse populations.”

We know that diversity of research participants is vital for ensuring the benefits of research are accessible to all. It’s time to put those findings into practice and take proactive action to build trust and recruit diverse participants to research.