Over the past year, HSC R&D Division has partnered with the James Lind Alliance to understand what really matters to people when it comes to Personal and Public Involvement (PPI) in Health and Social Care research in Northern Ireland.
To do this, we launched Involvement Matters — an initiative designed to make public involvement more meaningful, consistent and accessible.
What We Did
From September to November 2025, a co‑produced survey asked people three simple questions:
- What works well in involving patients, carers, service users and the public in research?
- What could be improved?
- What should be the priorities for strengthening PPI?
We heard from 249 people across Northern Ireland, including patients, carers, members of the public, community organisations, health and social care professionals, researchers and Public Involvement practitioners.
What We Heard
The findings were clear and consistent:
- Meaningful involvement matters
People want to understand why they are being involved, how their views will be used, and what difference they make. - The basics make a big difference
Clear communication, plain language, realistic expectations and time to prepare are essential for good involvement. - Equity is practical
Payment, accessibility, digital inclusion and reaching under-served communities are central to who gets to take part — and who doesn’t.
Public contributor Laura Collins highlighted the importance of hearing from people who are often overlooked, saying this work helps ensure that “health research equity is now firmly on the agenda.”
What Happens Next
A final workshop will bring people together to agree practical recommendations for each focus area.
The full project report will be published in June 2026.
While this work took place in Northern Ireland, the themes are relevant across the UK. As we mark the 4th anniversary of the Shared Commitment to Public Involvement, the message is clear:
People want to be involved in shaping research — and we must ensure the systems around them support involvement that is meaningful, fair and impactful.
