Moderators' Experiences of the Safety and Effectiveness of Patient Engagement in an Asthma Online Health Community: Exploratory Qualitative Interview Study.

backgroundAmong 5.4 million people receiving treatment for asthma in the United Kingdom, more than 2 million experience suboptimal control, leading to the use of health care services and resulting costs as well as poorer quality of life. Online health communities (OHCs) are increasingly used as a source of lay health advice, providing opportunities for learning and mutual support and complementing information from "official" health sources. While engagement with OHCs has the potential to improve self-management, concerns remain about the reliability and usefulness of the information posted. Professional moderation of such communities is essential for supporting sensitive patients, ensuring adherence to forum guidelines, and maintaining clinical safety.

objectiveThis study aims to examine the experiences of moderators in an asthma OHC, identifying challenges and possible areas to optimize the safety and effectiveness of patient engagement.

methodsAll 6 current moderators of a nationwide charity-hosted OHC participated in in-depth, semistructured, audio-recorded, remote interviews. Audio recordings were transcribed verbatim and qualitatively analyzed using reflexive inductive thematic analysis.

resultsThe 6 moderators interviewed comprised 4 (67%) specialist respiratory nurses, 1 (17%) volunteer patient ambassador, and 1 (17%) customer support manager (all female, with average age 45, SD 10.5 y). In total, 5 (83%) moderators had at least a year's experience of OHC moderation. Three main themes were generated from data analysis: moderation processes, challenges to effective moderation, and OHC effectiveness. The first theme focused on the different moderator roles and tasks undertaken, including the application of OHC guidelines in dealing with inappropriate content. The second theme covered difficult issues, such as mental health, and practical challenges, including lack of time and concerns about missing problematic posts. The third theme focused on the factors that made the OHC effective and increased its effectiveness, including keeping users safe, generating more OHC activity, encouraging discussion, and raising awareness of the OHC. We found a contradiction in how the moderators perceived the OHC's effectiveness and their role in moderating it. While they expressed concerns about having insufficient time to moderate the OHC, they also felt that it was underused and would be more effective if it were busier or more active.

conclusionsBuilding on the challenges experienced by the moderators, several recommendations were put forward to optimize the safety and effectiveness of the asthma OHC. Moderators often work in isolation without external training or interaction with others. More research into OHC moderation is needed. A continuous professional development framework could improve moderation quality and user support, aligning with the evolving needs of these communities. These results can be relevant to national and international policy, attempting to enhance the safety of patients' engagement with OHCs.