How Online Communities of People With Long-Term Conditions Function and Evolve: Network Analysis of the Structure and Dynamics of the Asthma UK and British Lung Foundation Online Communities

Abstract

BackgroundSelf-management support can improve health and reduce health care utilization by people with long-term conditions. Online communities for people with long-term conditions have the potential to influence health, usage of health care resources, and facilitate illness self-management. Only recently, however, has evidence been reported on how such communities function and evolve, and how they support self-management of long-term conditions in practice.ObjectiveThe aim of this study is to gain a better understanding of the mechanisms underlying online self-management support systems by analyzing the structure and dynamics of the networks connecting users who write posts over time.MethodsWe conducted a longitudinal network analysis of anonymized data from 2 patients’ online communities from the United Kingdom: the Asthma UK and the British Lung Foundation (BLF) communities in 2006-2016 and 2012-2016, respectively.ResultsThe number of users and activity grew steadily over time, reaching 3345 users and 32,780 posts in the Asthma UK community, and 19,837 users and 875,151 posts in the BLF community. People who wrote posts in the Asthma UK forum tended to write at an interval of 1-20 days and six months, while those in the BLF community wrote at an interval of two days. In both communities, most pairs of users could reach one another either directly or indirectly through other users. Those who wrote a disproportionally large number of posts (the superusers) represented 1% of the overall population of both Asthma UK and BLF communities and accounted for 32% and 49% of the posts, respectively. Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users’ posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice.ConclusionsIn this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers’ engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management.

Prevalence and Impact of Dietary Avoidance among Individuals with Hidradenitis Suppurativa

“…Diet is a topic of discussion in the community of people with HS. The majority of these discussions happen in online communities, which have experienced a tremendous upsurge in popularity for people with HS [7]. Within these communities, there are informal studies, with patients making interventions and observing the effects [4].…”

Superusers’ Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study

“…To fully understand the unique mechanisms of behavior change through internet-based interventions, collaboration and knowledge transfer between researchers, nonprofit organizations, and private organizations have been recommended [ 24 ]. Our network study of peer support in the Asthma UK and British Lung Foundation (BLF) OHCs [ 25 ] in collaboration with the platform provider HealthUnlocked has highlighted the key role of superusers. Superusers are distinct from community moderators formally appointed by the platform provider; the number of moderators among the highly active users was negligible [ 25 ].…”

“…Our network study of peer support in the Asthma UK and British Lung Foundation (BLF) OHCs [ 25 ] in collaboration with the platform provider HealthUnlocked has highlighted the key role of superusers. Superusers are distinct from community moderators formally appointed by the platform provider; the number of moderators among the highly active users was negligible [ 25 ]. Superusers are a naturally available resource and are responsible for holding successful OHCs together, engage with users with low posting activity, and indirectly contribute to the formation of ties between users.…”

“…This is attracting growing interest from academics, HCPs, and policymakers. Despite the evidence of superusers’ key role in successful OHCs, little is known about this small but critical population, what motivates them to contribute to the community and stay active over time [ 22 , 25 ], whether they encounter any challenges, how their contribution could be supported in any way, and what would make OHCs safer and more effective. This study set out to understand what motivates superusers to adopt this role and the reciprocal value it offers them.…”

“…Here, we undertook an asynchronous web-based structured interview study of UK superusers previously quantitatively characterized [ 25 ], in collaboration with the charity Asthma UK. We additionally aimed to explore superusers’ interfaces with HCPs and their views on HCPs’ potential role in promoting engagement with OHCs and on HCPs’ engagement as OHC participants themselves.…”