Crowd with Masks

Background

Online health communities (OHCs) are virtual spaces where people congregate to exchange support on shared medical concerns, share advice on communicating with healthcare providers, collectively interpret new medical literature, and offer each other emotional support. OHCs can take many forms, from dedicated forums around a specific topic (e.g., cancer, to groups formed on broader social networks (e.g., Facebook), to groups constructed by researchers, to informal communities which pop up to connect existing care networks of friends and family with a shared medical concern. OHC membership might be exclusive to peers, include other stakeholders such as caregivers and healthcare providers, or target a broader audience for health activism. 

OHCs have long been the focus of researchers in the fields of Computer-Supported Cooperative Work (CSCW) and Human-Computer Interaction (HCI). Prior research has focused on diverse topics, such as the type of support requested and provided by members, the different roles that members assume, how members come together to generate shared knowledge through collective sensemaking, 
the relationship of patients, informal caregivers, and healthcare providers within and outside the OHCs, the challenges in content moderation, why members leave, and the design challenges in building successful and engaging communities. OHCs have been mostly found to have a positive impact on members' lives by creating feelings of empathy and empowerment, especially in the context of underdiagnosed, rare, or `enigmatic' diseases where medical support can be more difficult to obtain. Methodologies in studying these questions have ranged from qualitative observations,  quantitative statistical analysis, mixed-methods analyses, and approaches for designing health communities. OHCs that have been studied before support a wide range of health diagnoses, such as diabetes, migraines, substance use disorders, and chronic diseases. The CSCW conference and subsequently the Proceedings of the ACM on Human-Computer Interaction have considerably and continuously contributed to this growing body of research on OHCs. With their history of research in CSCW, the study and design of OHCs warrant further discussion among the research community to provide a global understanding of what we have learned so far. 

At the same time, new challenges are arising and are challenging how healthcare, and as a consequence OHCs, operate. For example, there is a growing appreciation of individual differences in disease trajectories, with entire countries setting strategic plans for understanding and supporting individualized healthcare (e.g., NIH calls for understanding individual differences in response to nutrition), thus, placing new importance on capturing and understanding unique personal experiences of individuals. Medical misinformation propagated online is recognized as pervasive and with dire consequences and requires a careful discussion of its relationship with OHCs. Finally, the global health crisis that was brought by the spread of the COVID-19 virus has resulted in major changes in health care: many non-urgent clinical interactions have transitioned to telemedicine, health care workers face increased mental health challenges in the form of stress, anxiety, depressive symptoms, and insomnia, and experts warn of long-term consequences on the physical and mental health of the general population. In this shifting landscape, it is imperative that researchers come together to discuss the opportunities and challenges that OHCs now face and to carefully map future research agendas.