Moderators’ experiences of safety and effectiveness of patients’ engagement in an asthma online health community: an exploratory, qualitative interview study (Preprint)
Authors: Wood Helen E , Karampatakis Georgios Dimitrios , Coulson Neil S , Nishanth Sastry , Li Xiancheng , Taylor Stephanie JC , Griffiths Chris J , De Simoni Anna 
Published: March 2024

BACKGROUND

Among 5.4 million people receiving treatment for asthma in the UK, over 2 million experience suboptimal control, leading to use of healthcare services and costs, as well as poorer quality of life for people living with asthma. Online health communities (OHCs) are increasingly used as a source of lay health advice, offering the opportunity to learn and support each other, and complementing information from ‘official’ health sources. While engagement with OHCs has potential for improving self-management, concerns remain about the reliability and usefulness of information posted. Professional moderation of such communities is essential for supporting vulnerable patients, ensuring adherence to forum guidelines and clinical safety.

OBJECTIVE

Our objective was to examine the experiences of moderators of an asthma OHC, with the aim of identifying challenges and possible areas where the safety and effectiveness of patients’ engagement could be optimised.

METHODS

All six current moderators of a nationwide charity-hosted OHC participated in in-depth, semi-structured, audio-recorded remote interviews. Audio recordings were transcribed verbatim and qualitatively analysed using reflexive inductive thematic analysis. The study was approved by Queen Mary University of London’s Ethics of Research Committee.

RESULTS

The six moderators interviewed comprised four specialist respiratory nurses, a volunteer patient ambassador, and a customer support manager (all female, average age 45 years). Five had at least a years’ 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 application of OHC guidelines in dealing with inappropriate content. The second covered difficult issues, such as mental health, as well as practical challenges including lack of time and concerns about missing problematic posts. The third theme focused on issues what makes the OHC effective and increasing effectiveness, including keeping users safe, generating more OHC activity, encouraging discussion, and raising awareness of the OHC. We found an element of contradiction in how the moderators viewed the OHC effectiveness and their role in moderating it, on the one hand expressing concerns about having insufficient time to moderate the OHC, while on the other feeling that the OHC is underused and would be more effective if busier/more active.

CONCLUSIONS

Building on the challenges experienced by the moderators, several recommendations were put forward to optimise the safety and effectiveness of the asthma OHC. Moderators often work in isolation without external training or interaction with others. 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.