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4th Annual Public & Patient Involvement Summer School

The fourth Public and Patient Involvement (PPI) Summer School took place on Thursday, 13 and Friday 14 June 2019, in the University of Limerick. The Summer School runs annually and is designed for individuals who wish to develop their knowledge and access resources for meaningful Public and Patient Involvement in health research.

The Summer School was open to individuals from community organisations, patient groups, researchers, students, health service providers and policy makers.

The Irish Cancer Society is committed to putting patients, families, survivors, supporters and the public at the very heart of what we do. It has been a priority of the research department in the last two years to increase PPI in our own process and also in the grants that we fund. As such, the Summer School is always of great interest to us.

Thursday, Day 1:

The Summer School had a packed schedule featuring talks from individuals and groups involved in PPI. Prof Anne MacFarlane (Professor of Primary Healthcare Research and Academic Lead of the PPI research unit) welcomed everyone and introduced Arnstein’s ladder of participation (1969, see image below) and encouraged everyone to read the International Collaboration for Participatory Health Research’s (ICPHR) Position Paper no. 1 “What is Participatory Health Research?” 

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Arnstein’s ladder of participation (1969)

Prof Jennie Popay (Professor of Sociology and Public Health at Lancaster University, UK) stated that “we are all equals with specialist/unique experimental expertise”. She quoted and reiterated the importance of remembering “nothing about us, without us” for all aspects of PPI. Prof Popay also referred to the INVOLVE National Standards for Public Involvement (published February 2019) and the Public Involvement Impact Assessment Framework (PiiAF).

Following the talks, all attendees participated in parallel sessions, which included topics such as ethics, governance and partnership agreements, arts-based methods in PPI, finding research partners, patient and community perspectives, and dissemination planning. Attendees also participated in “Dilemma Cafés” where we could explore key questions in PPI practice.

Friday, Day 2:

Friday consisted of another Dilemma Café session, PPI in PhD research projects and a workshop on “What goes into a successful PPI section of research grants?” which was facilitated by Dr Anne Cody (Head of Pre-Award at Health Research Board (HRB)). The afternoon session consisted of a panel discussion moderated by Anne Cody. The panel consisted of Cally Jeffers (Limerick City Community Development Project), Dr Avril Kennan (MRCG), Dr Derick Mitchell (IPPOSI), and Dr Marie Oppeboen (Carmha Ireland).

Dr Chris Crockford and Dr Michelle Lowry from the research department at the Irish Cancer Society attended the Summer School and participated in the Dilemma Cafés. The experience and insights from all attendees were extremely helpful. The feedback provided from all attendees, organisers, and facilitators will be taken on board to help us to continue to increase and advance PPI in our grant processes and in the research we fund.