Short survey: should researchers be able to communicate with research participants who stop taking part in studies early?
Date: 22 February 2023
A group of patients and University of Leeds researchers invite all UK REC members to take part in a short survey about researcher communication with research participants. It is estimated that this will take 10-15 minutes to complete. Only current REC members are eligible (including those on a break who could in theory return). Please feel free to pass to other REC members who might like to take part. Please note that we are requesting responses from individuals, not for each REC, and more than one response per REC is allowed.
The survey relates to a wider project about how best to support research participants who stop taking part early (including those who withdraw consent and who stop in other circumstances).
Some guidance has been developed for researchers about how to ensure these research participants get access to good quality information to support them when they are ending their participation early.
Any such researcher contact would clearly need approval and oversight by an independent research ethics committee. The survey therefore would like to know what you, as a REC member, think about the idea of researchers providing information to participants around the time of their stopping participation. This includes what level of review you would suggest for communications, any issues you would want to be addressed and how you would expect communication materials to have been developed.
You can find the survey, and more information about what taking part will involve, at https://leeds.onlinesurveys.ac.uk/rec-views-informing-participants-stop-taking-part. The closing date will be the end of March 10th.
If you have any questions, or if you would like to take part in this but cannot use the Online Surveys format for any reason, please contact the project lead Will Cragg at w.cragg@leeds.ac.uk.
This survey has obtained ethical approval from the University of Leeds School of Medicine Research Ethics Committee (reference MREC 22-007).
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