What is PPI?
PPI stands for Patient and Public Involvement. It means patients, carers, and members of the public helping shape research, healthcare projects, policy, services, education, or innovation.
It is not the same as being a research participant. A participant takes part in a study. A PPI contributor helps shape how the work is planned, explained, delivered, or improved.
At its best, PPI brings lived experience into the room early enough to make the work more useful, more accessible, and more connected to real life.
Who can take part?
You do not need qualifications, medical knowledge, or previous experience.
If you have lived through a condition, used a healthcare service, supported someone else, filled in the forms, waited for appointments, explained symptoms, managed treatment, or noticed what makes care easier or harder, you already bring useful knowledge.
Why lived experience matters
People who live with illness notice things systems often miss: appointment fatigue, inaccessible language, transport barriers, cost, forms, waiting, sensory load, communication gaps, and the difference between a plan that works on paper and one that works in real life.
PPI helps research, services, and health information become clearer, fairer, and more practical.
Ways you might get involved
- Joining a patient advisory group.
- Reviewing patient information leaflets or consent forms.
- Helping shape a research question.
- Giving feedback on a healthcare service, resource, or website.
- Taking part in a workshop or discussion group.
- Helping design surveys, tools, education materials, or public information.
- Joining a patient organisation, safety group, or advocacy network.
What PPI involvement usually looks like
Some PPI roles are one-off. Others are part of an ongoing group or panel that meets occasionally.
You might be asked to read something in advance, join an online meeting, attend a workshop, complete a short feedback form, or share your view on whether something makes sense from a patient or public perspective.
Many opportunities are designed to be flexible, and you can usually start with something small.
What difference can it make?
PPI can shape the questions researchers ask, the way services are designed, the language used in patient information, and whether a project is realistic for the people it is meant to help.
Sometimes one comment from lived experience can reveal a problem that would otherwise have been missed.
Getting started
If you are curious about PPI, you could start by joining a mailing list, following a patient organisation, looking for a one-off workshop, or reviewing a document for a project related to something you know about.
There is no minimum level of involvement. Small contributions still count.
PPI resources and opportunities
Ireland
How PPI is used in practice
BEDHEAD note: lived experience is how systems learn what actually works.
PPI is one way to help shape better systems. If you need support understanding your rights within healthcare, visit the Rights and Advocacy guide.