Involving members of the public in designing your research can improve its quality and relevance. Good public involvement can lead to better designed research and improve participant recruitment.
If you involve the public in your research it is more likely to be ethically acceptable, which helps to reassure the Research Ethics Committee (REC) that the research respects participants’ rights, safety and dignity.
To demonstrate this to the REC, it’s important that you describe how patients and the public have contributed to the design of your research in your research ethics application.
We have produced new guidance to help you with this, based on the kind of questions about public involvement RECs are interested in. If you can answer most or all of the questions below there’s a good chance you’re on the right track.
10 questions to ask about your public involvement
1. Who is involved – who are the patients, carers, service users, or members of the public you’re working with, and how many are there?
2. How is their experience relevant – why is this valuable for your study?
3. What specifically are they doing – at which stages of the research?
4. How is their involvement changing your research – what difference does it make?
5. How is their involvement helping you to address the study’s main ethical issues?
6. How is their involvement making a difference to the research design and methods – for example, is it shaping the research question, intervention, and/or the outcome measures?
7. How is their involvement making a difference to how you’ll manage potential risks and burdens – for example, is it helping to identify potential emotional or practical obstacles for participants?
8. How is their involvement making a difference to the recruitment process – for example, is it helping you to decide how best to approach potential participants?
9. How is their involvement making a difference to the consent process – for example, are you co-developing the participant-facing information so participants will be able to understand the study and be able to make an informed decision about whether or not to take part?
10. How is their involvement making a difference to how the study results will be shared – for example, is this helping you to plan how to make the study results available in a way that will be accessible to different audiences?
You might find it helpful to involve the people you’re working with when you complete your application for ethical review.
It might also be helpful for one of the people you’re working with to attend the Research Ethics Committee meeting with you to help explain how and why the study design is likely to be acceptable to participants.