Evaluating Peer Online Forums to Support Health: Ethical and Practical Challenges

Abstract

Abstract Many people use peer online forums to seek support for health-related problems. More research is needed to understand the impacts of forum use and how these are generated. However, there are significant ethical and practical challenges with the methods available to do the required research. We examine the key challenges associated with conducting each of the most commonly used online data collection methods: surveys, interviews, forum post analysis, and triangulation of these methods. Based on our learning from the Improving Peer Online Forums (iPOF) study, an interdisciplinary realist-informed mixed methods evaluation of peer online forums, we outline strategies that can be used to address key issues pertaining to assessing important outcomes, facilitating participation, validating participants (users who consent to take part in one or more parts of the study), protecting anonymity, gaining consent, managing risk, multistakeholder engagement, and triangulation. We share this learning to support researchers, reviewers, and ethics committees faced with deciding how best to address these challenges. We highlight the need for open, transparent discussion to ensure the research field keeps pace with evolving technology design and societal attitudes to online data use.