Talking Trials: Including the voices of people from minority ethnic backgrounds in health research

People from minority ethnic communities face significant health inequalities but are under-represented in health research designed to address these inequalities.

Funded by the UK Research Innovation Rethinking public dialogue, the Talking Trials project brought together a group of co-researchers from diverse ethnic backgrounds to discuss health research and provide well-considered recommendations to clinical trial stakeholders to facilitate inclusive engagement and involvement in health research.

The project was set up as a partnership with The South Riverside Community Development Centre (SRCDC), serving the area of Riverside, Canton and Grangetown in Cardiff (the most ethnically diverse ward in Wales). The organization’s expertise and experience were crucial in building trusting relationships with the co-researchers and their communities.

Our key question

How can people from diverse minority ethnic backgrounds influence health research in terms of both what and how is this research done.

Methodology

The projects combined a deliberative democratic approach with innovative participatory art methodologies to organize 8 co-production workshops. This methodology helped us to advance group learning and maximize the contribution of people facing additional language barriers.

We delivered three preparatory workshops to build up the knowledge, confidence and trusting relationships as well as develop key deliberation skills of our co-researchers. Five subsequent deliberation meetings were held where good quality evidence was used to support deliberation.

Utilising an ‘in-reach/out-reach’ approach, we worked with some of the co-researchers to become ‘community connectors’. They developed their own sessions and presented their journey through the project to other members of minority communities via the SRCDC’s existing community groups (ESOL English class, ‘Women’s Chat’ community group, Young people’s group, SRCDC digital literacy class).

Overarching methodological findings

1. The participatory co-production workshops and the use of community connectors helped to redress power dynamics between researchers and people from minority ethnic backgrounds.
2. The co-researchers reported increased confidence, empowerment and knowledge of health research following their involvement in the project. They felt confident and able to voice their opinion on health research both through word and imagery, reflecting on what matters to them and how this should be reported back to the research community.
3. The trust developed between the group was integral to the group sharing and reflecting on their own experiences of health care and what is important to them.
4. The participatory art element served to deepen enquiry and foster group cohesion.
5. Projects like this can diversify the research process itself as some our co-researchers have commenced lay research partner roles within CTR and a lay advisory group is in development.

Wider community engagement

Art produced by the co-researchers formed the basis of a series of 10 panels curated and designed by the project artist, featuring contributions from every member of the group. We utilized this exhibition for further wider community engagement at various community events (Riverside Festival, Eid celebration event), where these panels provided a forum for further discussions about clinical trials with other members of the wider Riverside community.

Recommendations for clinical trials practice

The Talking Trials group produced 11 well-considered recommendations for the health research community which outlined how people from minority ethnic communities can influence research development, delivery and dissemination:

1. Researchers should establish a mutually beneficial relationship with community organizations that work with minority ethnic communities.
2. Clinical Trial Units should establish a diverse community advisory panel for ongoing input into the research process.
3. Cultural awareness training for researchers.
4. Research teams should be more diverse to represent surrounding communities.
5. Collect data on ethnicity from trial participants.
6. Eligibility criteria should be equally open to all and people should not be excluded because of language.
7. Recruitment needs to be fair, flexible and inclusive.
8. Study documents should be developed with inclusion in mind and alternative languages made available.
9. Individualized approach to consent: people’s needs, values and beliefs need to be considered during the consent process.
10. A diverse range of communication channels should be considered and used.
11. Celebrating diversity and developing a culture of inclusion is a continuous process of improvement, not a one-off initiative. These recommendations should be revisited every year.