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Report of the CRN Kent, Surrey and Sussex PPIE Community Forum

Colleagues leading Patient and Public Involvement and Engagement (PPIE) from NHS Trusts, and other health and care organisations in Kent, Surrey and Sussex shared their experiences, challenges and plans for the future at the PPIE Community Forum earlier this month. This was the first occasion that those with responsibility for PPIE had met face-to-face.

The knowledge-sharing forum was facilitated by Madeline Bell, PPIE Lead for NIHR CRN Kent, Surrey and Sussex (CRN KSS), and was attended by 20 people from across the region. Discussions on the day were focussed around “roses” - success stories, “buds” - areas of growth and development, and “thorns” - problems and challenges.

The “roses” identified by delegates included the positive impact that the Participant in Research Experience Survey (PRES) can have on participant experience through study delivery, the value of working with public Research Champions to embed the public voice across research activity, and the time investment that could be made in PPIE leadership development thanks to the CRN KSS Space To Lead PPIE Programme.

Many of the delegates were able to attend the event thanks to their involvement in Space to Lead in PPIE, a CRN initiative which provides backfill funding to enable people to dedicate their time to PPIE activities and development of their leadership skills in this area.

The group identified a number of developing “buds” in their organisations, for example, more research studies are now peer-led (i.e. being generated through lived experiences). The common challenges faced by PPIE representatives included how to increase the diversity of research study participants, and the varied extent to which the strategic importance of PPIE is understood across organisations.

“The value of embedding leadership in PPIE is demonstrated by the achievements of our partners who have participated in Space to Lead in PPIE,” said Madeline. “Colleagues across the region have demonstrated their dedication to the involvement and engagement of patients and the public in health and care research by coming together to share their experiences, hopes, and to look at how we can address challenges as a community.

“This feels like the first step to real momentum for PPIE across Kent, Surrey and Sussex,” she said. “How this is best achieved is open for discussion, and the value of this forum is that we can share the successes and challenges we face, and learn together.”

“There is so much excellent work going on in PPIE around the region, and a true willingness and generosity to share and look to the future together.”

The PPIE Community Forum will meet again in September 2022.

If you have any questions about PPIE please email Madeline Bell