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Public involvement and ethical review - a blog by Jim Elliott

Last updated on 24 Oct 2019

Jim Elliott

I always enjoy observing Research Ethics Committee (REC) meetings. The committee members scrutinise studies across a range of research areas, talking to research teams face to face or via the phone to understand more about the work they want to do.

When reviewing a research application, REC members want to know some simple but specific things about how applicants are working with patients, carers, service users or other members of the public when they design and carry out their research. They want to know how many people are being involved and what their relevant, lived experience is. They need this to check enough people are involved and to understand how their perspective is useful to the proposed research. They also want to know what these people have been (or will be) asked to do – in other words, how their involvement is going to shape the research.

RECs want to know about these things because working well with the right people can address many of the core ethical issues which they consider when reviewing an application.

For example, working meaningfully with people who have a specific health condition when planning a trial which involves participants with the same condition, is likely to result in a trial design which is more feasible for participants. REC review involves ensuring that trial arrangements are appropriate, practical, and respectful for participants – so working with people who are experts in living with a condition helps to assure the REC that your study meets these requirements. And doing so is also likely to have a positive impact on recruiting and retaining participants.

To help applicants explain how public involvement is part of their research, this summer we launched a new section of the HRA website to guide applicants through how to involve enough of the right people in the right ways. There’s also guidance in IRAS for six key questions in IRAS (A6-2, A13, A22, A30-1 and A51), which explains which details to include and where to include them in applications for ethical review. You can find this by clicking on the i button next to each question. Following this guidance makes it clear to the reviewing committee how public involvement is having an ethical impact on your research.

I’d strongly encourage you to use both of these resources to make sure that you include the most useful information about public involvement in the IRAS application form. Doing this will help the REC evaluate how working with relevant patients and members of the public is improving the quality and ethical acceptability of your research.

When high quality research generates robust evidence, everyone benefits, and public involvement is crucial to making sure this is always the case. 

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