Talking Trials

Talking trials uses participatory approaches and art methods to foster community dialogue. We work in partnership with South Riverside Community Development Centre in Cardiff.

Background

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

Methodology

Drawing on the principles of deliberative democracy, we organized 8 co-production workshops (learning stage – 3 meetings and deliberation stage – 5 meetings) with participatory art methodologies being central to our method.

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.

We sought to redress the power dynamics between researchers and public (co-researchers from minority ethnic backgrounds) as they themselves are the voice spreading the message of what matters to them as they have the opportunity to voice what matters to them and present their recommendations to the research community.

Participation in health research

The Talking Trials group have formed their own identity and are engaged and committed to discussing matters around health research. They see the value of their input into the activities that surround clinical trials and are keen for their voice to become a part of the overall process. There is hope and optimism for the future of Talking Trials by the co-researchers and there is a drive within the group for it to become more formally established as an advisory group attached to the clinical trials centre.

Additionally, the community connectors have become an important and novel part of our overall approach. The four community connectors have taken ownership of their individual sessions and are each delivering their own unique and personal interpretation of their experiences with Talking Trials. This was not only positively received by the people attending the workshop, but it was also particularly encouraging to see the co-researchers effectively communicate about the value health research and clinical trials with communities usually invisible from health research. As one of the community connectors said at the end of her session:

‘Our voices need to be heard and this is the best way of us doing that. It is about saving lives and if we didn’t take part, they then might make medicines that do not work for us’.

Benefit of art as a form of a public dialogue

The use of art within Talking Trials has been transformative and has allowed us to delve deeper into conversations about health research than would have been possible had we used more traditional forms of dialogue. As one of our co-researchers said:

‘It's like there's a freedom. So there's no expectation. I find in the group, you're free to speak your thoughts and to show you artistic endeavours. It’s a safe space. So you sort of control it without actually controlling it which is brilliant. So, the artistic creative way is a safe way for us to talk about something that is hard and difficult and where there are differences. It levels us.’