World Cafe Small Groups

Experts by Experience in Public and Patient Involvement (PPI): Health Research Board sponsored event led by PPI Ignite at DCU

Experts by Experience in Public and Patient Involvement (PPI): Health Research Board sponsored event led by PPI Ignite at DCU


DCU PPI Ignite team in collaboration with local partner organisations hosted a Health Research Board (HRB) sponsored Expert by Experience (EbE) online event on 15th October 2020. The purpose of the event was to unpack what is meant by experience and to explore why EbE is an important and distinct part of PPI, including the identification of challenges and solutions for EbE recruitment. Due to the global pandemic, the original face-to-face event to take place in March 2020 was cancelled. The event was reformatted and held virtually. Over 60 people attended, representing experts by experience, members of the public, patients, researchers and research managers, clinicians, and academics.

The event was opened by a keynote address from Dr Alison Faulkner (Survivor, Researcher and Trainer) who presented on the meaning of Expert by Experience from a mental health recovery perspective. This covered sub-topics such as Power and Knowledge, and that what society traditionally considers to be universally true about mental health is based on the knowledge of professionals and practitioners – not on the knowledge of those who live with the experience. This led to questions such as - what do we overlook if we ignore experiential knowledge, and what is the threat that experiential knowledge represents to clinical and “scientific” knowledge? Alison also described features of the Recovery Approach for example it being a journey and a process towards a meaningful life and outlined the challenges inherent to recovery such as contested definitions and understanding about what recovery is, and the strengths and limitations of the Recovery Narrative. Alison concluded her keynote address by reflecting on the role and value of experiential knowledge and the importance of giving it space to grow and develop both within and beyond research.

A lively panel discussion followed which was chaired by Tom Scott, CEO of Spina Bifida Hydrocephalus Ireland, and involved panel speakers Martha Griffin (Expert by Experience DCU), Louise Hopper (Assistant Professor Psychology DCU), Kara Madden (SAGE Representative and Patient Representative on Patient Safety Strategy 2019-2024) and Patrick Nwaokorie (Area Lead for Mental Health Engagement HSE), each of whom drew on their experiences of either working with Experts by Experience or being an Expert by Experience and fielded questions from the audience.

Finally, a modified world café style discussion unpacked important aspect of experiential knowledge, distinct contribution, challenges, recommendations and an Irish network. Discussion from the World Café are undergoing analysis to inform a briefing report with recommendations for increasing capacity and advancing expertise by experience in the context of PPI. Once available, further details will be posted/circulated.