At the time of writing, the UK Covid-19 Inquiry is under way. The key purpose of the inquiry is to look at the impact of the pandemic and learn lessons from the UK’s response to it. Probably like a lot of people who are involved in health research, I have been following the inquiry with great interest. A key theme that’s been apparent for me has been trust – in particular, the loss of public trust in health professionals, policymakers and politicians. And sometimes in the research itself.
Trust is the glue that bonds us together. We need it for effective government and governance. The public need to have trust (at least to some degree) in “experts”, be they politicians, policymakers, clinicians or researchers. Trust is needed so that people follow laws, rules and instruction and advice. Trust is non-partisan and relevant to people of all political persuasions, ages and religions.
And trust was a key motivation for establishing the Agora Digital Centre back in 2021. We are an enterprise unit based in the School of Healthcare Enterprise and Innovation at the University of Southampton. We offer three key services to researchers in health and social care.
- THE podcast: how to do public engagement
- Devolved research funding in universities – a counter-narrative
- Multilayered interventions to foster community relationships
First is a consultancy service, where we collaborate with researchers to improve and support how they involve patients and the public in their research. We can be co-applicants on research proposals or the patient- and public-involvement lead on a proposal; we can provide costings for patient and public involvement as well as give advice and guidance on research proposals and projects.
Second, we provide training and run events, such as workshops, for researchers and the public on patient and public involvement.
Finally, we are seeking to develop a network of community organisations representing minoritised ethnic communities with whom we will work to increase their representation in research.
Key rationales for involving patients and the public in research include that it results in more relevant and better quality research and outcomes. Patients and the public can bring insight into what issues affect and are of importance to them and their communities. They bring their experiences of what it is like to live with an illness or condition or use a particular service. They can provide advice on how to recruit participants from their communities, suggest what language would work on recruitment documents and data-collection instruments, add nuance to the interpretation of research findings and recommend how best to engage and disseminate research findings to communities.
And, of course, let us not forget that many research funders require patients and the public to be involved in the research that they fund.
But at the Agora Digital Centre, we include another rationale for involving patients and the public in research: building trust.
When we talk about trust, we aren’t talking about the patients and public deferring to the “greater expertise” of professionals and just accepting every decision they make. Those days, thankfully, are long gone. Patients and the public should question and challenge experts – and vice versa! We are talking about developing relationships between all the stakeholders involved in research. We are talking about professionals, patients and the public collaborating and listening to each other to improve research questions, instruments, recruitment techniques and dissemination. And, of course, the involvement of the public needs to be meaningful rather than tokenistic. They need to have a real voice that influences decision-making on the research.
But how does developing trusting relationships work in patient and public involvement? Anyone can put a couple of patients on a steering committee and then claim the public are “involved”. Much harder is creating spaces, building capacity, providing support and findings ways for people to have their voices heard.
I suggest reaching out to people and community organisations and asking them what issues matter to them. Nominate someone, often a member of staff, who has responsibility for being the key point of contact for the public involvement in your research and addressing any issues.
Always have more than one member of the public as part of your team or sitting on the steering committee – a lone public member can feel isolated – but make sure you budget for this. You should also give them clear roles and responsibilities, which can include appointing them as chairs or co-chairs of committees. And make sure you provide the public with the necessary support and training so that they can provide effective contributions and succeed in their roles.
Constantly reflect on and evaluate how things are working and whether or not the arrangements you have in place enable people to feel heard and valued. I am working on a National Institute for Health and Care Research-funded study, Pathways to Implementation for Public Engagement in Research, which is exploring the role of patients and the public in the implementation of research evidence. We have regular reflective sessions with the patients and the public with whom we – researchers – work, where we talk about what we are doing well and how we can improve. These reflective sessions, led jointly by me and a member of the public, provide an opportunity to build rapport and the trust that underpins successful patient and public involvement.
Involving patients and the public in research will not be a panacea to restoring trust, but it is a key step on the way.
Gary Hickey is head of Agora Digital Centre in the School of Healthcare Enterprise and Innovation at the University of Southampton.
If you would like advice and insight from academics and university staff delivered direct to your inbox each week, sign up for the Campus newsletter.
comment