Evaluating peer online forums to support health : ethical and practical challenges (Preprint)

Lobban, Fiona and Caton, Neil and Glossop, Zoe and Haines, Jade and Hayward, Gemma and Heapy, Connor and Johnston, Rose and Jones, Steve and Lodge, Chris and Machin, Karen and Marshall, Paul and Rakic, Tamara and Rayson, Paul and Robinson, Heather and Semino, Elena and Vidler, John (2025) Evaluating peer online forums to support health : ethical and practical challenges (Preprint). Journal of Medical Internet Research. ISSN 1439-4456 (In Press)

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 inter-disciplinary 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, protecting anonymity, gaining consent, managing risk, multi-stakeholder 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 ongoing open, transparent discussion to ensure the research field keeps pace with evolving technology design and societal attitudes to online data use.