Welcome to PRP-NetTT
The UK Rheumatology Patient Research Partner Network & Think Tank
PRP-NetTT is a new peer-led movement connecting experienced Patient Research Partners (PRPs) across the UK who are involved in rheumatology research and public involvement work.
We exist to share knowledge, amplify patient insight, and influence how involvement is done—raising the bar for meaningful, respectful, and impactful collaboration in research.
Who We Are
We are a network of experienced patient contributors with lived experience of rheumatological conditions. Collectively, we’ve been involved in dozens of studies, conferences, advisory roles, and co-authored papers across the UK.
We come from all corners of the country, working with different institutions and teams—but we believe in the power of connection beyond regional boundaries. By linking up, we aim to pool our insight, strengthen our voice, and support each other as peers.
What We Do
Network: Create a wider mailing group to share involvement opportunities, updates, reflections, and resources
Think Tank: host a smaller group who meet 4–6 times per year to explore challenges, review practice, and offer peer-led guidance
Spark Ideas: We want to help identify unmet needs, generate project concepts, and shape guidance based on real-world experience
Promote Good Practice: We advocate for early involvement, fair payment, and respectful collaboration
Our Values
Inclusion
Respect
Lived Insight
Early Engagement
Equity in Recognition and Pay
What to Expect Here
This Substack is our shared space to post reflections, showcase our work, and share insights on involvement in rheumatology research. We'll feature posts from different PRPs and invite guest voices from across the ecosystem of research and public involvement.
Whether you're a fellow PRP, a researcher, a funder, or simply curious—welcome. This is just the beginning.
🔗 Join the conversation.
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