21 May 2021
Rosie Davies is Patient and Public Involvement Research Fellow at NIHR ARC West and People in Health West of England. She’s retiring in June, so here she looks back on 20 years of being involved in patient and public involvement (PPI) – before it was even called PPI. We’ll miss you, Rosie!
It’s difficult to believe but it’s been 20 years!
In 2001 I was off work and on benefits having had several severe episodes of illness. I was in my 40s, and thought I’d never work again. Having bi-polar disorder seemed to make me a different person. Back then I was training as a psychotherapist and the diagnosis was a spanner in those particular aspirations. I was in an empty space, just starting to recover but not knowing what to do.
The realities of being a mental health service user were an eye-opener. In day services (yes there were day services back then) I made some good friends. I wanted to understand more about the services, and why the world of the ‘seriously mentally ill’ seemed so disconnected from the world of therapy and the ‘worried well’. I’d worked in the voluntary sector, so I got involved at Bristol Mind, and with Avon and Wiltshire Mental Health Partnership (AWP), the local mental health NHS trust.
I was surprised to find out how many opportunities were open to me. I attended and then helped to run voluntary sector self-management training for people with bi-polar disorder. I became a lay member inspecting hospitals. I joined some user-led research projects and ended up leading one. In AWP I helped to create better information for people in hospital, and eventually became a member of the Research and Development Group. I learned a lot about the experiences of people with mental health problems, I rebuilt my confidence and discovered that I still had skills and experience to offer. And somehow these efforts to find my way turned into paid work.
Back then there was already quite a lot of involvement in mental health, and in cancer care. Payment was an issue, particularly for those on benefits, so nothing’s changed there. In mental health some involvement focused on making care and services better, but there were also strong radical and political voices. These tensions seem more muted nowadays, but of course I’m looking at involvement from a different place.
When I first connected with INVOLVE, which was the national organisation for public involvement in research, it was outside the National Institute for Health and Care Research (NIHR). Advisory group members included those with more radical and challenging perspectives. These voices are still heard in the literature on involvement – but the realities of the work for me now are more institutionalised. These days there are a lot more of us in paid involvement roles – in the NIHR, in universities, in the NHS and across the health and social care sectors. And our roles ask us to support and develop public involvement for those organisations, so we are more in need of independent voices to stretch and push the possibilities.
Policy support for public involvement is stronger; now NIHR funding bids require resourced involvement and reviewing panels include public contributors. These changes have made a big impact, helping to embed involvement. There is more involvement now than there was back then, but we are still on the journey to include diverse public voices in all we do.
The top of the public involvement hierarchy used to be user-led research, now it’s co-production. Given that the NIHR, research institutions and research funding are very top down this aspiration is rather surprising, perhaps even weird! The first principle of co-production is to share power, and another is to ensure everyone benefits from working together. We are still trying to work out what might be possible – as part of a broader shift to better collaboration with more diverse stakeholders and more focus on research impacts. Many of our ambitions are both important and difficult to achieve.
The tension between aspirations and what is achievable is obvious for co-production, but this isn’t new. The report card permanently, and perhaps necessarily, reads “could do better”. Staff roles can be hard sometimes. We navigate between meeting organisational objectives, supporting public contributors, and asking colleagues to do more. Research and university cultures are ever more demanding places, and supporting public involvement needs space and time. Relationships with colleagues and public contributors are very important – giving and receiving support has kept me going.
Looking back I can see that we have moved forward, involvement is more embedded and expected – at least in NIHR funded health and social care research. But despite progress many of the old challenges remain. Looking further along the road I’d love to see protected research funding for research priorities and questions generated by the public and communities as this could enable more genuine co-production. I’d also like to see more specialist training and support for involvement staff, to help us reflect and learn to do better. Most of all I’d like to see the ranks of public contributors working in health and social care grow larger and more diverse.
I started out trying to recover and find my way into a new life. I found interesting and demanding opportunities that led back to work. I had the chance to study public involvement, to do research at UWE, and take on a variety of jobs. Now I’m in my 60s and looking back on a long involvement ‘career’. I have been fortunate, and I’ll miss all the colleagues and friends I’ve worked with, particularly those connected to my current role at ARC West and People in Health West of England.
If you want to be our next PPI Research Fellow, apply here. Applications close 4 June 2021.