Questions people ask about patient involvement.

What is patient and public involvement (PPI)?

Patient and public involvement means research is done with or by patients and the public, not to, about or for them. In practice, people who live with a condition help shape the question, the design and the materials before a clinical trial or product goes ahead. It's different from taking part as a participant.

Source: NIHR, briefing notes for researchers on public involvement.

Is a panel survey involvement or consultation?

A survey or an on-screen review of a finished document is consultation: people are asked, and the client decides. Involvement in the sense the UK Standards for Public Involvement mean is people helping to shape the research from the question onward, as named contributors. We do both. Surveys, reviews and the report are consultation at scale, and we call them that. The advisory add-on, where matched members join your steering or advisory group as named, paid contributors for the life of the research, is involvement. A funding panel or an ethics committee will still expect to see how patients shaped the question and the design, and a report on one finished document doesn't replace that.

What's the difference between patient involvement and taking part in a clinical trial?

Involvement means helping to shape the clinical trial. Taking part means being in it. Our members help shape plans, products and materials. They're never paid to join a clinical trial.

How do I answer the IRAS public involvement questions?

Say who you involved, what they did, and what changed because of it. The IRAS form asks how many people you involved, what they did, and how it made your clinical trial more acceptable to the people taking part. A strong answer describes the people involved by their characteristics, lists what they raised, and says what you changed and what you didn't. Our report is written to give you exactly that.

Do patients need to review the participant information sheet before ethics submission?

It's expected. The Health Research Authority's checklist for applicants says: "Participant information developed without public involvement will not normally receive a favourable opinion from REC." Put the information sheet, consent form and invitation in front of people who have the condition before you submit.

Source: HRA, checklist for applicants on public involvement and ethical review.

How much should you pay patients for involvement in research?

In the UK, the NIHR's recommended rate is £27.50 for around an hour of involvement, updated in December 2025. We pay members £27.50 an hour, worked out for the time each task takes, and we publish our full rate card.

Source: NIHR payment rates for public involvement, updated 16 December 2025.

How many patients should you involve?

There's no fixed number; it depends on the question. To see whether a point comes from one group or from everyone, you need enough people in each group. We typically ask 150 to 300 members in surveys and around 40 for detailed on-screen reviews.

How is a patient panel different from a patient advisory board?

An advisory board is a small group who meet a few times a year. A panel lets you ask many people, matched to the condition, whenever you have a question. Many teams use both: the panel for breadth, the board for ongoing advice. Our members can also join your advisory board as paid contributors.

How do you make patient involvement representative?

Start from who has the condition, not who's easy to reach. We use published data on who has each condition, recruit members to match it, and report the breakdown of everyone who took part.

Is patient feedback on our material confidential?

Yes. Members sign a confidentiality agreement when they join, and can sign your own wording too. They see your material inside our platform, where download and browser screenshots are blocked, and their confidentiality agreement covers photographing the screen. Material is taken down when the work ends.

Can patients help with recruitment strategy and site selection?

Yes. We show you where people with the condition live, from the first part of their postcodes, and ask them what would make taking part possible, such as travel, time off work and childcare. We report what they said. We don't promise it will change your enrolment.