If you can describe most or all of the following public involvement best practice in your application, there’s a good chance you’re on the right track.
10 ways you can use public involvement to inform your ethical review
- How patients shaped the research question or why patients thought the research important (not merely stating that patients thought it important).
- How patients shaped the intervention and decided which outcome measures to use in clinical trials.
- How patients’ input was used to minimise the burden on participants.
- How patients influenced the ethical design of a trial - e.g. whether use of placebo would be acceptable.
- Where patients identified that participants might potentially experience distress and what appropriate changes had been made in response.
- How practical arrangements were changed to better meet the needs of participants e.g. follow-up clinics at more appropriate times.
- How recruitment processes were changed to be sensitive to the emotional and practical needs of potential participants.
- How patients were involved in deciding what questions to ask in interviews/ focus groups, rather than only being asked comment on the wording of questions written by researchers.
- How patients were involved in designing the protocol and patient facing information from the start, the responses they gave and the changes made as a result.
- How patients would continue to be involved in the project at different stages, with a clear explanation of what input was expected and how it might shape future decisions.