Talking Trials: Including The Voices Of People From Minority Ethnic Communities In Health Research5 July 2022
Populations recruited into clinical trials need to include diverse participants of different ages, sexes, races, and ethnicities to ensure wide applicability. Existing data shows people from ethnic minorities are included in clinical trials at rates lower than we would expect given their share of the population. Minority ethnic communities also face barriers to effective engagement in health research process in all stages of the research cycle including priorities setting as a result of low participation rates in clinical trials.
The Talking Trials project was set up as a partnership between the Centre for Trials Research and South Riverside Community Development Centre (SRCDC) and funded by the Welcome Trust via the ISSF3 Public Engagement Proof of Concept funding. The trusting partnership with SRCDC proved to be instrumental in bringing together a group of 13 co-researchers from minority ethnic backgrounds to discuss health research and explore the issues of underrepresentation in trials. The group met for 3 co-production workshops during the spring and summer 2021. The focus on co-production was a deliberate attempt to foster a network of individuals new to research to become involved as co-researchers and democratise research.
We worked with Catherine Lamont Robison, an artist and researcher specialized in applying art and creativity in medical learning who used participatory art methodologies to facilitate the group learning and to help overcome language barriers. We discussed clinical trials, what they are and why they are important. We explored perceptions and views on clinical trials whilst also engaging in art activities alongside these conversations.
The inclusive and democratic co-production enriched by the participatory art element provided a powerful means to introduce our co-researchers to clinical trials and health research, enabling them to create new insights and foster new relationships. With little or no knowledge of clinical trials at the beginning of the process, our co-researchers settled into an intimate and cohesive group, freely sharing their initial fears and mistrust towards clinical trials. As conversations progressed, these attitudes clearly shifted as our co-researchers have become open to participating in clinical research and also becoming involved in the research process itself.
Artwork produced during the workshops was incorporated by Catherine into an art exhibition with including quotes and pieces from the group to reflect our discussions and the themes identified (see Talking Trials panels below). In August 2021 we took the exhibition at the Riverside Festival where we had the opportunity to engage with the wider Riverside community. Close to 200 people passed through the Talking Trials tent at the festival and we also organized participatory arts activities for children under the supervision of Catherine.
Projects like Talking Trials can help diversify the research process itself as two of our co-researchers have commenced lay research partner roles within the Centre for Trials Research. One of them is Mashmooma Din, a project worker based in SRCDC. Here is Mashmooma’s reflection on her involvement with the Talking Trials project: ‘I have been involved with the Talking Trials project during the pandemic of Covid-19. It was first time in my entire life to be involved actively talking about medical trials. It has given me a depth insight about what is involved and how community members can have their say and be part of a bigger picture. I find the research project very useful, interesting and rewarding in terms of how the whole process worked. I have been asked if I would like to become a research partner for another study in the CTR. I am delighted to have this opportunity and be able to give my opinion and ideas which may represent the BME communities in Cardiff.’
The Centre for Trials Research is a UKCRC-registered clinical trials unit. It is publicly-funded to enable applied research that informs policy in health and social care in Wales and the UK, and is currently running studies across Wales, the UK and internationally. The Centre is funded through Welsh government by Health and Care Research Wales, and Cancer Research UK.