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In this blog post, Polly Kerr explores the journey of a project born out of a challenging situation, which led to a call for stronger PPI support systems in health and care research. Discover how a single workshop led to a nationwide initiative to enhance PPI in health and care research.

Back at the end of 2021, the National Institute for Health and Care Research (NIHR) Centre for Engagement and Dissemination (CED) put out a call for proposals to address the theme of ‘learning from and strengthening regional infrastructure for involvement, engagement and participation in health and care research’. Proposed activities needed to answer the question: ‘to what extent and how effectively does regional infrastructure for involvement, engagement and participation realise impact for research?’

As we could only submit one proposal from each NIHR area we brought together representatives from all the local NIHR organisations*, two public contributors who had been involved with a number of projects in the region, and a researcher to bounce around ideas.

An upsetting incident that had happened recently in a PPI meeting in which a few of the group had been present, brought us to thinking about the many and varied difficult situations that can come up in PPI activities – and how nobody is properly trained or well-equipped to handle them.

We proposed holding a workshop to bring together public contributors, PPI staff and researchers to share experiences and together work towards solutions and recommendations. Happily, we were awarded the funding, but at rather short notice and needing to be spent within three months, so our preparation for the workshop was not as comprehensive as we would have liked.

Ironically, this led to our own difficult situation on the day with some of the group not feeling supported when a delegate behaved inappropriately. Despite that, the overwhelming feeling afterwards was that this was important work and it was good to have started a conversation around it.

The project has been written up as a case study, along with the other projects that were funded, and is published on the NIHR Learning for Involvement website where you can read in full about what we did and the key outcomes. The main thing that we agreed needed to happen, and which wasn’t already being addressed elsewhere, was to develop training and accreditation for PPI staff.

When we put this to NIHR CED, they were keen to see this work progressed – and crucially offered additional funding for it to go ahead. Some of us from the original organising group have taken this on, collaborating with a number of colleagues nationwide whose work is similar and feeds into what we are doing.

We are currently aiming to deliver a finalised framework of competencies for PPI staff, and pilot two training sessions by the end of 2023, which we will evaluate and report back to CED on. We hope very much that our recommendations will lead to better, consistent and centralised resources and systems for PPI, to support all involved as the field continues to grow and evolve.


*This includes the School for Primary Care Research (through NDPCHS), Applied Research Collaboration Oxford and Thames Valley, Oxford Biomedical Research Centre (BRC), Oxford Health BRC, Research Design Service South Central, Clinical Research Network, Community Healthcare MedTech and In vitro Diagnostic Cooperative

Opinions expressed are those of the author/s and not of the University of Oxford. Readers' comments will be moderated - see our guidelines for further information.


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