Patient and Public Involvement Reporting Questions

Reporting on PPI activities

We use shared Patient and Public Involvement (PPI) reporting questions to collect information from our funded researchers in annual reports.

A group of health research funders, Cancer Research UK, British Heart Foundation, National Institute for Health and Care Research, and Health and Social Care Research and Development Northern Ireland, led by Arthritis UK, came together in 2025 to review and update the shared PPI reporting questions within the Researchfish (owned by Elsevier) platform.  

This initiative, supported by Researchfish (part of Elsevier), involved a survey, a review, and an open discussion of the current data’s strengths and pitfalls. It culminated in a formal consultation on the proposed changes with all organisations using these shared questions. 

For our researchers

This is your opportunity to tell us how people with lived experience have been involved in your research, what difference it has made, and what challenges you’ve faced.  

As organisations committed to supporting excellent PPI, we want to: 

• Understand and report on the impact of involving people with lived experience.
• Share best practice examples and stories of meaningful involvement.
• Identify common barriers and explore how funders can help address them.
• Strengthen the evidence base for PPI as a vital part of impactful, equitable research. 

Please note that these questions and terms reflect common practice in health and social care research. Other funders may use different definitions for involvement and engagement, aligned with their own strategies, preferred terminology, and broader research portfolio.

We hope these changes help you and your colleagues reflect on involvement activities and improve the quality and consistency of PPI in research. This initiative marks a key step in supporting researchers and funders to drive best practice, strengthen the evidence base, and ensure PPI remains central to impactful, equitable research. 

For research organisations

These changes aim to improve how we capture and understand the role and impact of PPI in research. 

All the organisations involved in the development are committed to sharing the revised reporting questions beyond those who use Researchfish (owned by Elsevier), to enable broader collaboration and comparison across funders and other organisations that support research.  

Wider adoption will increase clarity for researchers, reduce reporting burden - particularly for those working with multiple funders - and promote consistency.  

Next steps

Beyond updating the questions, the group agreed on a process for annual cross-funder meetings to review data collectively. This will allow funders to identify trends, share best practices, and address common barriers. Through partnership working, we are strengthening the evidence base for PPI and ensuring that funders can celebrate successes and respond to emerging challenges together.

Building on this success, Arthritis UK is now working alongside the Health Research Authority and the Charities Research Involvement Group to develop a common set of PPI application questions. These are seeking to link seamlessly with reporting questions, further reducing burden and increasing clarity and collaboration across the sector. We will share these with you soon.  

More information

If you have any questions or feedback, please do not hesitate to get in touch with the project lead, our Research Involvement Manager Gemma Winsor, at g.winsor@arthritis-uk.org.