Over the past year, Health and Social Care Research & Development (HSC R&D) Division have been working in association with the James Lind Alliance to determine focus areas for Public Involvement in Health and Social Care research in Northern Ireland.
Why we undertook this project
The UK Standards for Public Involvement offer an excellent framework for what effective Public Involvement should look like. However, there remains less clarity about what focus areas need to be addressed to make involvement more consistent, meaningful and sustainable. Therefore, we developed an initiative called ‘Involvement Matters’, which aims to strengthen and improve Personal and Public Involvement (PPI) in Health and Social Care research across Northern Ireland.
We asked a broad and diverse group of people a few simple questions:
- What do you think works well when it comes to involving patients, carers, service users and the public in Health and Social Care research?
- What do you think could be done better in Public Involvement?
- What do you think are the most important priorities for improving Public Involvement in health and social care research?
With members of the project steering group, a survey was co-produced and was accessible from September 2025 to November 2025.
We brought together patients, carers, service users, members of the public (including those with no prior experience of being involved in research), people from the community and voluntary sector, researchers, health and social care professionals, and Public Involvement practitioners. In total 249 people from across Northern Ireland completed the survey.
To coincide with the 4th Anniversary of the Shared Commitment to Public Involvement, we are delighted to launch the interim report which summarises the main findings from the survey.
What we heard was remarkably consistent. People did not ask for radical new frameworks or complicated systems. Instead, they spoke clearly and practically about several PPI focus areas;
Meaningful Public Involvement matters more than ticking boxes.
People want to understand why they are being involved, how their input will be used, and whether it makes a difference. Being asked to contribute without clarity or feedback can feel tokenistic and discouraging.
The basics matter greatly to Public Involvement contributors.
Clear communication, plain language, agreed roles and expectations, and time to prepare all make a huge difference. When these basics are missing, even well-intentioned involvement can become frustrating or inaccessible.
Equity shows up in practical ways.
Issues such as payment and reimbursement, accessibility, digital inclusion, and outreach to under-served communities came up repeatedly. These are not “extras” — they are central to who can get involved, and who cannot.
Reflecting on the project progress to date, Laura Collins, Public Contributor, member of the project steering group and 24/7 family carer says:
“It has been positive and encouraging to be a partner in this unique JLA initiative, where, from the get-go, all perspectives were sought out, with discussion contributions being really valued. Citizen and lived experience experts have shaped the process; the survey content and actively supported its wider distribution.
The evidence base used for research decision-making is not that effective, if it only involves ‘easy to reach’ patients. This dedicated piece of outreach work, will be a springboard, to both identify and start to address, current gaps in hearing the voice and varied support needs, of those who are most often overlooked and sadly underserved. Health research equity is now firmly on the PHA agenda going forward.”
What happens next — and why this matters beyond Northern Ireland
The next stage of the project will bring people together in a final workshop to agree on an actionable set of recommendations for each of the PPI focus areas. The final project report will be published in June 2026.
While this project took place in Northern Ireland, the results will be familiar to colleagues across the UK. Many of the challenges — and many of the solutions — are shared.
As we mark four years since the launch of the Shared Commitment to Public Involvement, this project offers a timely reminder: Progress in Public Involvement depends on continued listening, honest reflection, and sustained action.
People remain willing — and keen — to be involved in shaping research. The task now is to make sure the systems around them truly support that involvement to be meaningful, fair and impactful.