Our journey in partnership

Pat Walkington and Julia Burton have been working with researchers from across England as part of a National Priority Research Programme in Ageing, Dementia and Frailty. The programme is a collaboration between ARCs which has been working to improve care for people with dementia and prevent falls in older people. Pat and Julia were supported in their work with researchers by Vikki and Naomi from the University of Exeter as part of ARC South West Peninsula, The overall programme had been initially led by Professor Helen Roberts based in Southampton as part of the ARC Wessex. Five years later, Pat and Julia have reflected on their continuing work:

Pat writes:

I have been a member of the public and community involvement and engagement panel for the Applied Research Collaboration (ARC) for Greater Manchester for about 12 years and later also became a member of the Health Innovation Greater Manchester panel. I have worked on many different health research projects where I have been able to offer a public/patient perspective. This includes writing plain English summaries for funding bids, sitting on advisory panels, being involved in different workshops and focus groups in my community as well as advising on information leaflets for the public.

In November 2020, I was asked to review funding bids for Healthy Ageing, Dementia and Frailty National Priority Areas. Normally my involvement would end here but then in 2022 when a public panel member for the ongoing projects retired, I was invited to join the Programme Management Group overseeing the 3 projects. I was welcomed by the team, helped to be brought quickly up to speed with progress so that I felt comfortable and valued as part of the team. The meetings were well-managed and, like Julia, I felt comfortable about asking questions, asking for clarification if there was something that I didn’t understand, and being able to give a patient/public perspective.

I valued the support of Vikki Goodwin and Naomi Morley, the PPI lead members of staff, who offered to meet with Julia and me before and after the Programme Management Group meetings so that we could get to know each other, discuss progress, ask questions and share ideas. This was a positive experience which I have now asked to be introduced to similar work Greater Manchester.

I had never heard of a Community of Practice so this was a new and interesting learning experience for me. Like Julia, I found this so valuable in being able to openly discuss project progress, ideas and issues with other PPI teams working on similar projects across the ARCs in different areas of the country.  I was disappointed when funding for this ended and our work could not continue.  However, now that I know that Communities of Practice can be so valuable I would not hesitate to encourage these to be set up for other research projects.

Finally, I am also involved as a PPI member/research partner in one of the 3 projects, the Flexi (Falls Exercise Implementation) Study, in Greater Manchester.  This has been another learning experience for me from writing the plain English summary and working on the funding bid, being an equal partner, to now being involved in PPI workshops with members of the public who have taken part in the exercise classes.  This morning we were listening to their ideas for public leaflets for the project extension and the positive experiences of how much stronger, fitter and confident that they felt from doing the exercises. They also said how much they had enjoyed the social aspects of exercising together.  

Julia:

I have been involved as a patient/public contributor since the very start and, supported by Vikki Goodwin and Naomi Morley (Exeter), have been enabled to contribute at every stage. I attended all the very regular management team meetings where it was very clear that  Helen Roberts  valued our input and ensured that the meetings were run in a way that made the content accessible to non-academics like me.

In my opinion, a very valuable and positive experience was the Community of Practice where the three funded project leaders and PPI leads met outside of the Management Group. Set up by the Management Group and facilitated by Naomi Morley we had regular meetings where issues involved in the progression of the research were discussed together and information, support, contacts and ideas  shared. This community became more useful as time went on and resulted in cooperation and problem solving across the ARC s as the three projects were addressing the same NIHR priority. I was disappointed when the funding for this was not extended although Pat Walkington and myself are still involved in the management group.

PPI contribution can be seen as a respected part of the entire programme. This was highlighted when Naomi, Pat and I spoke about patient and public involvement across the programme and development of a community of practice at the British Geriatrics Society Autumn Conference in November 2023. We were the only public contributors at the conference and I hope we were pioneers to be followed by others in the future.