Tackling under-representation in clinical trials and health research

Who gets to take part in the research that shapes how we are treated? For too long, the answer has been people who are easier to reach: white, male, more digitally confident, more likely to trust institutions. The people whose health outcomes are worst are the ones least likely to be in the studies that determine what good care looks like.

We have worked with clients including Genomics England and NHS England on this problem from different angles. With Genomics England, we led community engagement across Bradford, Birmingham and East London for the Genomics, Healthcare and You programme, reaching global majority communities whose voices are rarely heard in conversations about genomics. The work used community-led, arts-based and narrative methods, including Tree of Life exercises and The Good Ancestor framework, delivered in community spaces and in mother tongue where needed. Trust was not assumed but built over time, with interim findings shared back to participants and community leaders over repeated engagements.

For NHS England, we’ve employed both qualitative and quantitative research approaches to understand why women, older people, ethnic minority groups, people with English as an additional language and those with fewer qualifications are less likely to respond to invitations to take part in clinical trials. The findings shaped practical guidance on how letter content, credibility signals and nudges can be adjusted to widen participation.

Across both projects, the pattern was clear: the barriers to participation are rarely about awareness. People under-represented in research often have considered reasons for staying out, and invitations that overlook those reasons tend to underperform. Our work sets out what we heard, and what it means for the design of studies and the communications that invite people into them.