What is this document and who is it for?
This document gives guidance for researchers to provide information to research participants who stop their participation early (including those who ‘withdraw’ from a research study) while the study continues. It is primarily for use in healthcare research involving individually consenting participants who contribute over a period (rather than where participants only make a one-off contribution). Where we say ‘researchers’, this includes anyone running or overseeing a research study who might want or need to provide information to research participants stopping their participation early.
Why should research participants who stop taking part get good information?
In general, it is right that participants in research projects are kept up to date with what is happening during their time taking part. People who stop taking part in research studies early likely also have particular information needs.
Can research participants be contacted after they withdraw from a study?
We accept that there can be sensitivities around researcher contact with participants after they have stopped taking part. However, it is not right to conclude that we cannot or must not provide any further information to these participants. Instead, we should aim to provide information but take care to do it sensitively and with appropriate oversight and guidance, including from independent ethics committees.
How should this document be used?
This document supports researchers through a comprehensive process to produce patient-facing materials specific to their study.