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Ethics Framework

Find out how we developed our ethical framework and how we look after participant data from forums, surveys and interviews.

There are very important ethical issues in analysing forum posts. People often share details about the things that are causing them distress, in the hope that other people who have faced similar problems can help them. It is vital that the forum feels a safe space in which to do this. We do not want this research to jeopardise this feeling of safety in any way. Therefore, we have developed a comprehensive ethical framework for this study. This has been developed with input from legal, clinical, academic and lived expertise, and approved by the Health Research Authority (IRAS 314029).

As the project progresses we may need to make changes to how the study is conducted. Any changes will be approved by the study sponsor and the ethics committee and will be updated here for information.

We hope that sharing this framework is helpful. We appreciate that some individuals may have further concerns or questions and we are happy to address these. Please email

Ethics Framework Development Process accordion Accordion

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Forum data

Click on the points below to find out more about how we manage data from forums.

Forum Accordion Accordion

Survey and Interview Data

Click on the points below to find out more about how we manage data from surveys and interviews.