Patient and public involvement
Patient and public involvement.
Shape the research question.
Patient and public involvement in research means working with people to shape the question, design and use of the work. It is distinct from taking part as a study participant. Start with what contributors can influence, make participation practical and accessible, and agree attribution, review and proposed use before recording or publication.
Influence the research, not only its delivery.
Patient and public involvement means working with people to shape research questions, design and use. Taking part as a research participant is a different role. Explaining a finished project is different again.
NIHR makes this distinction in its public-involvement guidance. It is a useful starting point for researchers, funders, charities and people considering a contribution. Read NIHR’s introduction.
Make the invitation worth accepting.
- What can people influence?Name the decisions that remain open and explain how contributions will inform them.
- Whose experience is missing?Consider who is affected and how practical, language or accessibility barriers could limit participation.
- What will participation involve?Discuss format, timing, support, expenses or remuneration where relevant, and how people can step back.
- What happens to the contribution?Agree attribution, review and proposed use before recording or publication. Explain how contributors will hear what changed.
For researchers, funders and commissioning organisations.
IAE can help connect the research question, community priorities, governance and feasible delivery in a planning or commissioning brief. Where specialist methods or facilitation are required, those contributions are agreed explicitly.
For patients, families, charities and patient groups.
You can suggest a question, recurring barrier or conversation that deserves attention. You do not need to be a client, disclose a personal medical history or prepare a proposal.
An initial conversation does not commit you to public storytelling. Purpose, format, attribution and use are agreed before a contribution is recorded or published. Email identifies the sender; it is not an anonymous submission service.
NIHR source checked 26 September 2026. This page invites discussion; it does not advertise a confirmed study, recruitment opportunity or partnership. IAE does not facilitate individual treatment access.