Integrating Patient and Public Involvement at the SAPC South West conference, 2019
1 May 2019
It was an exciting prospect that the University of Southampton’s School of Primary Care and Population Sciences would be hosting this year’s South West Society for Academic Primary Care (SAPC) event; a regional meeting showcasing the latest research and education in academic primary care.
Previously, Patient and Public Involvement (PPI) had a fairly low profile in the conference, therefore, the challenge for us was how we were going to integrate PPI into an Academic Conference? With five bursaries available for PPI contributors to attend one day including travel costs, it was an opportunity too good to miss! One of our PPI contributors attended the first day and found it to be informative and enjoyable.
What better than to start the conference off with a Keynote Presentation by Simon Denegri, National Director for Patients, Carers and the Public. Simon talked about ‘learning together: public involvement and engagement in health research’. Simon’s presentation talked of ‘bringing humanity to research’. In order to do this, researchers need to engage people in their communities. Powerful words and a challenge to shift our thinking and approach to be more in line with the national agenda!
This year, PPI not only featured as the first keynote presentation but also as part of Day One’s parallel sessions, which brings us nicely onto….
Patient and Public Involvement Parallel sessions
Feedback was extremely positive, delegates enjoyed the mix of longer and shorter presentations. The parallel sessions provided insight and inspiration.
What struck me listening to Amanda Roberts, Public Contributor for the Eco (Eczema Care Online) and BEE studies was her honesty, enthusiasm and down-to-earth way of communicating her experiences in PPI. Mairead Murphy from the University of Bristol shared a unique approach to PPI, approaching the public on one carriage of a train from Plymouth to Bristol for their input and contributions. On another occasion, public were approached in the foyer of a Central Library. Both experiences provided valuable learning as well as interesting data. I felt challenged to think more out of the box!
Emma Teasdale, from the University of Southampton presented her work on PPI in Cellulitis, including a video link of a Public Contributor sharing his experiences of PPI and challenge to keep moving the cellulitis research agenda onwards. Bridie Evans, Swansea University Medical School explained that involvement by diverse public members and patients had enabled their team to make some valuable changes in their research. Interestingly, Kate Boddy from the University of Exeter, challenged the view that it is too difficult to involve PPI partners in meta-analysis studies saying that preliminary findings from their research suggested public involvement contributed tangible benefits.
Both Jackie Seely and myself, PPI Officer at the host, presented work on the Wessex Public Involvement Network’s (PIN) Inclusion and Diversity strategy, along with the Reaching Out project. The Wessex PIN is a regional group of staff and PPI contributors working within NIHR organisations across Wessex to establish the area as a beacon of best practice in PPI.
‘Reaching Out’ is a project, which aims to try to build relationships and begin to work with under-represented social groups in Patient and Public Involvement. We weren’t to know Simon’s keynote presentation would set us up so beautifully for our pitch, it was incredibly encouraging to know that we are on the right track with the national agenda!
So, what did we learn from integrating PPI into an Academic conference? Public Contributors attending and sharing their experiences was valuable. We still need to do more to collect PPI and other delegates’ feedback; how did they feel the integration of PPI worked at an Academic conference? Did they find it added value? What kind of value? What have they learned from the PPI sessions? Would they have liked more?
Although South West SAPC 2019 didn’t complete all the criteria to meet the ‘Patients Included’ conference charter, it did move some way towards this. Patients or caregivers with experience of the issues participated in delivery of presentations, and were welcomed in the audience, including active questioning of presenters. Travel and accommodation expenses for patients or carers participating in the programme were paid, generally by the research studies they were working on, although bursaries were provided by the conference organisers to allow PPI attendance for those without study funds available.
Overall, it has been a challenging, interesting and enjoyable journey, we totally recommend it!