Whose advice did people with long-term conditions trust on health forums?

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People with long-term conditions are increasingly using the internet for health advice and information. Online forums let them interact with others who have similar conditions, but it remains unclear how they assess online health information. This study explored how people with contested and uncontested long-term conditions use internet forums.

Researchers conducted semi-structured interviews with 20 participants with ME/CFS and 21 with type 1 and 2 diabetes, and analysed the interviews using thematic analysis. Participants were recruited through online and offline routes: forums, email lists, newsletters and face-to-face support groups.

Forum use was complex and nuanced, influenced by individual and illness-specific factors. Participants trusted people with experiences and perspectives similar to their own, while also valuing conventional biomedical information and advice. Online support let forum users draw on personalised support based on their peers’ lived experiences. The authors noted that the role of digital literacy in developing and maintaining online relationships must also be acknowledged.