Published: 15 May 2020
Jeremy Taylor, NIHR Director for Public Voice, NIHR Centre for Engagement and Dissemination (CED), writes about his experience starting a new job under lockdown, and how an unexpected family illness has clarified his views on what is needed to take forward the agenda for patient and public involvement.
Even by the standards of life under lockdown it has been a strange experience. My induction into being the new NIHR Director for Public Voice, which started on 1 April, has taken place entirely by phone and video. I have met only two members of my team face-to-face. I sit at my makeshift desk, staring out at the trees outside my bedroom window while trying to get my head around the complexities of publicly funded health and care research.
Like the NHS, the NIHR is not a single organisation, but rather a family of centres, units and programmes, national and local. Together they invest about £1bn a year generating knowledge to improve health, care and wealth. My job – and that of the new Centre for Engagement and Dissemination which I head – is to maximise the public contribution to that research effort and to ensure that the evidence is disseminated in ways that make best use of it.
A new normal
Part way into getting to grips with the new job, my teenage son came back from a bike ride complaining of back ache and spent the next week accumulating alarming symptoms. Eventually we took him to hospital where he is now making an excellent recovery from a rare bacterial infection. My wife and I have been alternating 24 hour shifts at the hospital (a kindness, despite the COVID-19 restrictions, that is extended to the parents of minors). After the new normal of lockdown, this has been the new, new normal for more than a fortnight.
It feels as though these last few weeks have been an extended metaphor for the challenges of public voice. Like a patient wanting to influence professionals, I am learning to navigate a complex system and work out how to make my voice heard with impact. As a parent, caring and advocating for my son in anxious times has depleted my energy and my capacity to engage.
I hope these personal experiences have kept me grounded. They have certainly helped to reinforce some of my instincts about what is needed to take forward the agenda for patient and public involvement. Here are three of them.
Keep it simple
Firstly, we need to keep it simple. While health research can be complex and technical, the public contribution to it need not be. It should be simple for researchers and public contributors to find each other. It should be simple for people to share their experiences, insights and views and know that these are valued and make a difference. It should be simple for public contributors to be remunerated. It should be simple to take part even if you have limited time and energy. We should take care not to baffle people with our well-meaning jargon; its nuanced distinctions between, for example, participation, involvement and engagement; and its acronyms like PPI.
Make it normal
Secondly, we need to make public involvement normal. Making it simple should help with this. Under the INVOLVE banner my NIHR predecessors have for many years helped to embed involvement in health and care research. But there is further to go. For members of the public, contributing to research should be as normal as giving blood or volunteering in your community. For researchers, involving citizens should be as normal as any other aspect of research – as integral to the process as getting the ethics, the methodology and the data analysis right. That means making involvement a matter of good research practice, not just compliance, or doing the right thing, but having the knowledge, skills, confidence and support to do it well.
Make it universal
Finally we should be aiming to make public involvement universal. The COVID-19 pandemic has hugely raised the profile of health research. We shouldn’t waste that opportunity. We should be using it to widen the pool of people who come forward to offer their time and energies as contributors and participants. The routes to public involvement are quite well adapted for educated, middle class people, often older, typically white. We need to make these routes work better for everyone. We might also need different routes and different roles for people to play. If nothing else, COVID-19, with its cruelly disproportionate impact on poorer and BAME communities, should be a wake-up call for diversifying public involvement.
Make it simple, make it normal, make it universal. These are three separate but mutually reinforcing ways of strengthening public involvement in health and care research. They resonate with my own recent experiences. I hope they will be my watchwords as we establish the NIHR Centre for Engagement and Dissemination and my role as Director for Public Voice.
Jeremy Taylor, NIHR Director for Public Voice, NIHR Centre for Engagement and Dissemination (CED)
Learn more about the launch of the NIHR Centre for Engagement and Dissemination.