Sometimes different, often the same: guidance on how recruitment and retention in trials need to be tailored to enhance participation of ethnic minority groups: a qualitative interview study in England

Abstract

Objectives

Ethnic minority groups are consistently underrepresented in trials, limiting the generalizability and equity of research outcomes. This study explored the acceptability of existing recruitment and retention interventions for individuals from ethnic minority backgrounds.

Study Design and Setting

We conducted semi-structured interviews with 20 adults from ethnic minority groups identified as “non-White British” in England. We used maximum variation purposive sampling to ensure diversity in age, gender, ethnicity, urban/rural residence, and religious background. Data were analyzed thematically using an inductive and deductive approach.

Results

Twenty adults (aged 20–70; 60% female) took part in the interviews. Findings were categorized into two main areas: themes specific to ethnic minority groups and themes related to recruitment and retention interventions. Cultural and linguistic considerations were considered critical for effective recruitment and retention. Opinions were mixed on the involvement of family members in decision-making about trial participation. Building trust within ethnic minority groups was deemed essential for encouraging participation. Participants highlighted the need for transparent communication when collecting and using ethnicity data and expressed concerns about potential tokenism. All participants emphasized the importance of providing clear information to support informed decision-making. Most participants preferred receiving invitation letters from their general practitioners (GPs), viewing them as more trustworthy, while some favored emails, as they were more likely to read them. Participants preferred a layered information approach that was concise but prioritized content on risks, benefits, and trial relevance. Higher financial incentives were sometimes perceived as indicators of increased trial risk.

Conclusion

Recruitment and retention strategies must be tailored and co-designed to reflect the needs and preferences of ethnic minority groups. Clear, culturally sensitive, and transparent communication about trial aims, risks, and benefits is essential for building trust and enhancing informed decision-making for participation. Inclusive practices are vital for improving equitable representation in research.

Plain Language Summary

We spoke with 20 adults from a range of ethnic backgrounds across England. Participants emphasized that clear, honest communication and respect for different cultures and languages are essential. Many preferred receiving information from their general practitioner (GP) due to existing relationship, as it felt more trustworthy than unsolicited text messages or emails from an unknown source. Some preferred emails over letters. People wanted simple, easy-to-read summaries about the study's purpose, the risks and benefits, and the reason for collecting information on their ethnicity. Some were concerned that offering higher financial payment made the research seem more riskier. Overall, we found that people conducting trials should take the time in building trust, communicating clearly, and considering cultural needs. This can help make research more inclusive and ensure fair representation of people from all backgrounds.