Which role is the invitation offering?
NIHR distinguishes public involvement in designing research from taking part in a study. Inserm also describes participatory research as collaboration in producing knowledge. Public engagement may instead explain research to an audience. These are useful distinctions, not universal legal categories. Ask the organiser to describe the purpose and say whether more than one role is involved.
What would you actually do?
Reviewing a leaflet or discussing research priorities can be advisory work. An interview, assessment or intervention may instead produce study data. The activity’s name is not enough: a workshop could serve either purpose. Ask whether your comments will improve the project, be analysed as findings, or both, and what information you will receive for each use.
Which decisions could you influence?
Ask which decisions are still open, who makes the final decision and how you will hear what happened to your feedback. Clarify preparation, meetings, training and any confidentiality responsibilities. Your experience matters without requiring you to represent everyone with the same condition. An invitation should not be read as a promise that every suggestion will be adopted.
What happens to your contributions and information?
Check whether meetings are recorded, notes are identifiable and quotations or your name may appear publicly. Ask how attribution is agreed and whether you can discuss sensitive issues privately. If you also join the study, clarify which information belongs to each role. Do not assume advisory work is automatically outside ethics, consent, privacy or employment requirements.
What should you ask about time and support?
Request the expected preparation time, meeting frequency, accessible formats and available support. Ask separately about payment, expenses, payment timing and any conditions you need to check locally. There is no universal rate or guarantee of payment here. Discuss what happens if health or other commitments make a meeting difficult, without assuming an adjustment is automatically available.
How can you clarify the invitation?
You could write: “Thank you for the invitation. Am I being asked to advise the project, provide research data, or both? What tasks, influence, information use and practical terms would apply?” Request a written role description and a verified contact for questions. Keep unresolved points visible before agreeing; this enquiry is not an application or a commitment.