Embedding patient and public involvement at the heart of our research

Luke Mounce, PI on FR1-IV 515 “Primary care research facilitation”

At the Exeter Collaboration for Academic Primary Care (APEx), we have seen the immense value in patient and public involvement and engagement (PPIE) in our research for a long time. Until joining the School for Primary Care Research, however, we had no “in-house” PPIE co-ordination and relied on collaborating with PPIE colleagues in the NIHR PenARC or bespoke arrangements.

As the APEx team continues to grow and our research portfolio burgeons, I felt we needed to embed PPIE at the heart of all our research and enable both academics and patient and public representatives to engage with each other more directly. I was awarded funds to employ a PPIE Lead for APEx to co-ordinate and champion our PPIE activities – a role that is now coming into its 3rd year and has been a phenomenal success!

To give a flavour of the activities being run, let’s hear from our PPI Lead and one of our patient representatives on their experiences.

Beccy Summers, APEx PPIE Lead

I have taken on the PPI Lead role within APEx from a colleague who had done fantastic work embedding PPI in all aspects of APEx’s work. Since taking over the role I have strived to follow this philosophy and have worked with the dedicated APEx PPIE group to grow the PPIE within APEx. To achieve this, we have run regular ideas cafes, which provide a relaxed atmosphere for researchers to discuss their early research ideas with the APEx PPIE group, enabling them to share their valuable experiential knowledge with researchers to help shape the research idea so that it blossoms into a relevant and high-quality project. We have delivered PPIE training workshops for researchers focused on how PPI can make a big difference to research and how patients and public can draw on lived experience to help researchers.

We have also delivered PPIE training for patients and the public around helping them to draw on relevant lived experience to share with researchers whilst working together. We are currently expanding the training for patients and public by launching a seminar series called “lunch and learn”. The topics of the seminars are chosen by the APEx PPIE group based upon what it is they feel they wish or want to learn. We had great success with the initial seminar run in April on integrated care systems and the implications of them for primary care research and PPIE. We opened this seminar to other SPCR PPIE members and had good attendance from each of them. Therefore, we intend to continue this collaborative learning approach.

More recently, we have been focused on PPIE work with young people. This has included working with a local charity to develop and run a PPI module lasting 7 weeks for students aged 13-16 years and creating a “curious minds” engagement event which is an interactive session that teaches students aged 13-14 years about PPI and provides them with space to start thinking about what research direction would be important to them within primary care.

Phil Ruthen, public member

Since the APEx launch event in 2022, I’ve noticed an increase in national debates - media, public and political platforms, the health/social care sector etc - about the best ways to support the health of the population and improve care. Whilst supporting research in primary care is a key to this, I think such research activity rarely enters these wider discussions, where the emphasis is still on delivery and access; unless of course initial research results can ignite the imagination and offer a good press story. Having a coordinated PPIE group with APEx offers members like me with a long-term health condition growing opportunities to be involved from the outset of a research idea and enables focus on the research and researcher, rather than worrying about the mechanics of involvement structures and bureaucracy. My personal involvement this year has included invitations to become a project collaborator, or co-applicant, following the popular Ideas Cafes, and continuing with shortlisting and interviewing for e.g., PhD Studentships. The introduction of specific subject presentations via ‘Lunch and Learn’ is a valuable programme to be developed, and my personal hope is in due course the current PPIE group membership can expand as requests and opportunities for collaboration grow.

The blog was originally published on Collaboration for Academic Primary Care (APEx) Blog