Wrapping Up the PRP Survey: What We’ve Learned—and What Comes Next

Result sharing from the UK PRP Survey (10)

UK Rheumatology PRPs are finding their collective voice!

Over nine previous result sharing blog posts, we’ve been exploring the results of our UK-wide survey of Patient Research Partners (PRPs) involved in rheumatology research. From motivations and training, to impact, barriers, and inclusion, PRPs generously shared their experiences—honest, thoughtful, and hopeful. We’ve talked about the personal impact of involvement—how it builds knowledge, confidence, and connections. We’ve explored challenges like time pressures, unclear roles, and navigating health limitations. We’ve reflected on the emotional demands of research involvement, and how peer support and recognition can make all the difference. Now, in this final post, we turn to one of the most important parts of any learning process: suggestions for improvement.

What PRPs Told Us Could Be Better

We asked: What could improve your involvement experience?Here’s what stood out:

🔹 Clearer communication – about roles, expectations, and the purpose of tasks.

🔹 Consistency in payment and recognition – including the added value PRPs bring to research, beyond ticking a box.

🔹 Accessibility – practical and digital, to ensure everyone can engage.

🔹 Stronger IT support – especially for hybrid or virtual contributions.

🔹 More opportunities for training – not just at the beginning, but ongoing.

🔹 Better follow-up and dissemination – to close the feedback loop and show how input is used.

🔹 Inclusion in conferences – not just as attendees, but as speakers, collaborators, and learners.

The message is clear: PRPs are not passive participants. They’re ready to contribute meaningfully—if the structures around them are built to support, not exclude.

This list echoes so much of what we’ve heard in earlier posts. The need for cultural change, proper introductory procedures, more accessible entry points, support, opportunities and recognition of contribution and the emotional labour of lived experience work. But what’s also clear is the sense of potential. There’s a strong appetite to do this better—and to do it together.

A Next Step: Creating a Space for Collective PRP Voice!

To help build answers to that question, I’ve been networking with some seasoned  PRPs and between us we’re launching a new Think Tank called PRPNetTT with its own freshly launched Substack space—a dedicated place for all experience levels of UK-based PRPs in rheumatology to connect, reflect, and share insights. We hope researchers and health care professionals working in this space will engage with it too!

The initiative has emerged directly in response to the gaps and needs identified in the survey: the desire for community, for learning, and for a stronger collective PRP voice in shaping the future of involvement. The desire to act and give back on what has been shared.

Whether you're an experienced PRP or just starting out, we invite you to subscribe, contribute, and be part of this growing peer-led space. Together, we can work towards improving the research experience for everyone involved.

🔗 Subscribe to the PRPNetTT Think Tank on Substack and help us co-create a more inclusive, informed, and impactful future for involvement.