JMIR Publications

ABSTRACT

Background:

Online Health Communities (OHCs) provide vital peer support and health information to individuals managing chronic conditions. However, sustained user engagement remains challenging, with many users reducing activity over time despite the ongoing benefits these platforms offer. While some individuals may improve or become more knowledgeable, sustained engagement remains critical because ongoing participation fosters trust, peer support, and continuous access to evolving health information that may persist beyond initial recovery or learning. Hence, it is important to consider how community needs evolve as users' health needs and information-seeking behaviors change to inform how we support users through different stages of their health and participation journeys.

Objective:

To examine user engagement in a large OHC, identifying behaviors, motivation, barriers, and design opportunities that could facilitate progression and enhance long-term participation.

Methods:

We conducted semi-structured interviews with 20 members of the American Heart Association Support Network Community. Participants included individuals managing cardiovascular disease and their caregivers. Using reflexive thematic analysis and narrative storytelling, we examined users' engagement motivation, behavior, challenges, and design opportunities across different stages of their community involvement.

Results:

This study highlighted four distinct engagement stages: discovery (crisis-driven initial engagement), exploration (navigation and orientation), commitment (active engagement and information management), and integration (sustained engagement and mentorship). Key barriers included information architecture complexity, concerns about misinformation, limited support for role transitions, and decreased participation as health management improved. Participants identified opportunities through which OHCs could facilitate progression between stages and enhance long-term engagement, including adopting adaptive recommendation systems, health information literacy programs, structured role transition support, and alternative engagement modalities, such as synchronous interactions and health tracking tools.

Conclusions:

User engagement in OHCs is dynamic and evolves with changes in health status, knowledge, and personal circumstances. Supporting sustained engagement requires stage-appropriate interventions, including personalized content delivery, health information literacy education, structured pathways for role transitions, and diversified engagement options. These findings provide actionable insights for designing OHCs that better support users throughout their health journey.