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DEMAND DIVERSITY: Exploring Ethnic Minority Attitudes Towards Clinical Trials

by COUCH Health with input from UK and US participants and patients, for use by COUCH Health and the wider industry

Summary of work

Under-representation in clinical trials means that stakeholders cannot be confident if the drug they’re investigating works for everyone. In 2019, of the ~46,000 clinical trial volunteers in novel drug approvals, only 9% were African American and 9% were Asian. The lack of representation of these populations could not be clearer.

Our research campaign set out to understand the barriers and perceptions of participating in clinical trials within ethnic minority communities across the US and UK. We conducted 90-minute in-depth interviews with 39 participants (18 US, 21 UK). 181 people also took part in the pre-task, and we covered differences in socioeconomic status, gender, age and locations.

Our findings support existing research that lack of trust stems from discrimination, suspicion over the motives of the pharmaceutical industry and disparities in the quality of treatment they receive. Ethnic minority groups feel ‘left out of the data’ but are also sceptical about getting involved in clinical trials. To improve recruitment and retention onto clinical trials, the Demand Diversity campaign was born, as a call to action for the pharmaceutical industry. Our research begins to build a credible story about diversity in trials, work towards solutions and be the voice for minority groups.

Judges’ comments

The campaign did valuable research and had very useful data for this important issue. The budget was small for such a big area, but was used in an innovative way. The campaign effectively focused on specific insights, such as compensation and getting younger people involved.