Resources for Public & Patient Involvement (PPI)
Public and Patient Involvement (PPI) is a way of doing research that supports collaboration between people with lived experiences, researchers, and research institutions. Below, you’ll find some of the resources we’ve found most helpful on our PPI journey. We hope you find them useful, too!
Our work is shaped by the people it affects most. To learn more about PPI, click here to visit our ‘Public & Patient Involvement (PPI) Panel’ webpage.
To learn more about getting involved with us, click here to visit our ‘Get Involved’ webpage.
Table of Contents
Created in partnership with RDCTN and Health Research Charities Ireland (HRCI) this guide offers practical steps to make health research inclusive for all. Whether you are a researcher, a charity leader, or a patient advocate, this guide was built for you. It’s not theory, it’s a collection of actionable ideas shaped by those with lived experience to ensure health research reflects everyone. Developed with the rare disease community, but designed for everyone in health research.
Why Research Matters: Insights From A Parent Of An Adult Son With A Rare Disease
Every year, thousands of families in Ireland receive a rare disease diagnosis. With limited public awareness and few treatment options, many face an uncertain and isolating path. But research is changing that; offering insights, options, and a sense of community for those impacted.
This guidance was developed by a group of public, patients, and researchers to help maximise the impact of your research poster.
Even small changes can make your research more approachable. Simple adjustments like improving the layout, using clear language, or adding visuals can make a big difference. We encourage you to try adapting one or two elements to help your work connect with as many people as possible!
Through two rounds of Seed Funding applications, we’ve learned a lot about what matters most to PPI partners.
Our expert PPI reviewers have shared their insights and observations, and this resource shares takeaways from their feedback. Whether you’re new to PPI or looking to improve, these insights can help you build more meaningful and impactful involvement.
Wait, what was that term again? To keep things clear, we’ve put together a quick reference of common abbreviations.
This glossary was co-created with insights from the UCD Clinical Research Centre and individuals living with rare diseases. We extend our appreciation to the following whose contributions inspired this glossary: Health Research Charities Ireland, Health Research Board, and Prof. Rachel Crowley.
In this unique interview, we ‘flip the script’ by having PPI Partner Liz Molloy lead the conversation with researcher Prof Rachel Crowley.
Every question in this interview was co-created by PPI contributors, ensuring that the topics reflect patient and public interests and insights. This video is part of our commitment to showcasing collaborative approaches in research and is available in multiple accessible formats (black and white, audio-only, transcript-only, and full color, all with captions).
Wondering how time intensive your PPI Projects really are?
This planning tool, developed by the UCD Clinical Research Centre, helps researchers and PPI representatives determine project intensity. Plan and record your project activities. Define your intensity indicators. Outline your tasks. Input timings.
Find a step-by-step guide to edit intensity and the tool here:
Public and Patient Involvement (PPI) is a way of doing research that supports collaboration between people with lived experience and researchers.
Here are a few of our favourite resources so you can learn more!
The Rare Disease Clinical Trial Network partners with contributors who have experience in any rare disease. They form our PPI Panel. Contributors are equal partners in research projects and improve the quality and relevance of research.
The Patient and Public Involvement Cancer Research Group for Diverse Backgrounds (Diverse PPI) developed a simple yet powerful and innovative resource, ARUARES, The Apricot, to support researchers and healthcare professionals when engaging diverse communities with no additional costs or resources.
The resource was introduced at their first public engagement event in April 2023, “About us, By us…” ARUARES, The Apricot is an acronym which serves as a mental reminder/note when seeking to engage diverse communities. The members have shown that inclusivity does not always require extra resources but rather mindful consideration.
Network Partners
