PCIE activities can help to produce research which respects the rights, safety, dignity and wellbeing of participants, which in turn may help to address issues which Research Ethics Committees (RECs) consider in their reviews. This could make it less likely that you will need to revise participant information sheets, consent forms, or other documents. Find out more about the impact of public involvement on the ethical aspects of research. (PDF)
The HRA website helps to clarify if and when ethical approval is required for involvement at different stages of the research cycle. It states that you do not need to apply for ethical approval to involve the public in the planning or the design stage of research, for example helping to develop a protocol, questionnaire or information sheet, being a member of a research advisory group, or preparing an application for funding or ethical review.
However, when you submit an ethics application for your research, you should fully describe how you plan to involve people in the management, conduct, analysis and dissemination of your study, because doing so is likely to address ethical considerations which are of interest to the REC. For example, if public members are attending or co-facilitating focus groups, they may find that talking to other people reminds them of their own negative experiences. This can cause distress or trigger emotions and memories, in which case, the public member who is carrying out the research may need additional counselling/support. If you are asked to attend a meeting with an REC, you could consider inviting a public member to attend with you.
If you are not sure whether your activity might require ethical approval, this Health Research Authority decision tool may help you to decide.
Regardless of whether REC approval is needed, you need to think ethically to ensure everyone has a positive experience. You can do this by thinking ahead to what some of the issues might be, pre-empting them, and putting strategies in place to prepare and protect people.
Links to Resources: