Annual Review 2022-23: public contributor's reflection

I strongly believe that the public and patients can offer a genuine contribution to improving research outcomes.

My experience of unexpected kidney failure, dialysis and transplant in 2018 was an eye-opening episode. It sparked in me an enthusiasm to get involved in health research, so I joined the Kidney Disease Health Integration Team, where I co-designed a national questionnaire study led by Drs Pippa Bailey and Katie Wong, looking at ethnic disparity in living kidney donor transplantation. I then helped the team design, read and comment on the trial to develop an intervention to improve access to transplantation.

Joining Bristol Health Partners’ Research & Innovation Steering Group enabled me to amplify the voices of patients and challenge researchers by reminding them about what matters to patients. As someone with African heritage, I feel that minorities aren’t adequately represented in health research. To play a part in addressing this, I have joined committees discussing EDI in research, helped create a role description for health research ambassadors (people who work with diverse communities as a bridge to research), took part in funding panels and discussed, challenged and improved funding proposals. . I feel that our voices on the Group are helping Health Integration Teams to change how they approach and run their projects. This year, there has been more emphasis on public involvement in every piece of Bristol Health Partners’ work, which is a reflection on us as a group of public contributors being part of the conversation and the culture change that’s taking place.

Being involved in Bristol Health Partners has also opened doors for me to engage in activities with other health organisations, hospitals, universities and faith and health charities. For example, I’ve been empowered to take a lead in running a public wellbeing consultation in my North Somerset community.

I believe strongly in serving and helping others. Good public contributors must voice their experiences but also disassociate from them to an extent to see different points of view, put themselves in other people’s shoes and have the capacity to understand others. I don’t want to only represent people like me – although that’s important – I want to speak on behalf of anyone who doesn’t feel able to do so.  I think a public contributor must be a representative but also an advocate.

The new Research Engagement Network is showing me that change is good, but it can also be scary. People get involved in health research because they want to improve things, but trust needs to be built, so this is an exercise in giving power to communities, putting them in the driving seat and making a commitment to this approach.  I’m looking forward to helping the Network develop over the next year and seeing what direction it takes.