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What are PPI and PPIE?

Patient and Public Involvement (PPI) is research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them. PPIE (PPI + 'Engagement') is a slightly broader umbrella term that also encompasses engagement with patients (even if not conducting research). PPIE across research has developed over the last 20 years from being regarded as, ‘a nice idea to do if possible’, to a funding requirement for key funders. There is increasing evidence that health research conducted with PPIE achieves better outcomes for patients.

Guidance and support

The Medical Science Division’s PPI Guidance for Researchers is a detailed five-part guide covering definitions, academic literature requirements, strategies and best practice, involving diverse groups, the research cycle, recruitment, communication, and more. The NIHR Oxford Biomedical Research Centre also has useful guidance. For individualised support, contact WIN’s Public Engagement team (Carinne Piekema / Hanna Smyth). WIN’s PPIE Lead, who works closely with Carinne and Hanna, is Mel Fleming

Participatory Research Oxford is a broad and ongoing programme of activity to strengthen the ecosystem for participatory research within, across and beyond the University. This website draws together key outputs from this programme’s first phase of activity: case study videos, insights from researchers, and suggestions for further reading to offer ideas, spark reflection and act as an initial springboard to help develop more participatory processes and practices in research.

We recommend that researchers consult the NIHR Diversity Data Guidance, which is a standard for diversity data covering data governance and when and how to ask diversity monitoring questions. It provides an overview of the suggested text for questions and responses for collecting data across the 9 protected characteristics outlined by the Equality Act 2010, and socio-economic status.