Looking inside online health communities

Online Communities with and without superusers - figure
30 Jul 2018

A recent study has investigated two online health communities for patients with chronic respiratory conditions - Asthma UK and British Lung Foundation.

Online health communities can influence health, use of healthcare resources, and improve illness self-management. The way people connect online and in particular how highly active users (called superusers) shape the online communities play a fundamental role in information diffusion, the authors said.

Researchers applied network analysis to the Asthma UK and British Lung Foundation online health communities. The report highlights the role of superusers (the 1% highly active users) within the networks.  The study found that:

  • The number of users and of posts has increased steadily over the years.
  • The majority of online users were mutually reachable and formed a large connected network, guaranteeing the widespread diffusion of information and support.
  • Superusers played a central role in these communities as a result of the characteristics of their online activity and their constant engagement. They preferentially replied to posts from users who were not equally well connected. In doing so, they additionally made other users talk, who would not be connected otherwise.
  • Removal of superusers would made the network to collapse in isolated non-connected groups of few users. Thus, superusers were responsible for holding the communities together.
  • Without superusers there would be no effective spread of information and support within the community.
  • Superusers were a constant available resource over time. As users became more active within the community, they became more likely to reply to posts than to ask questions. This suggests that superusers gradually became ‘experts’ providing others with advice and support.

Dr Anna De Simoni from the Asthma UK Centre for Applied Research - Queen Mary University of London, said

"In this work we used social network analysis to uncover mechanisms underlying the potential of online communities to provide effective self-management support interventions.  This study contributes to a better understanding of the role played by superusers in sustaining and providing integration and cohesion to the online communities. Even without being ‘appointed', superusers would spontaneously emerge as the community grows large enough. Our findings will therefore prompt and inform future research interested in understanding superusers’ role as a potential healthcare workforce in online self-management support interventions."

It is known that the management of long-term conditions represents a growing and potentially insurmountable challenge to health systems worldwide. A major policy response has been to attempt to empower people to self-manage their condition better through programs for self-care and self-management. Indeed one in four people with long-term conditions who use the internet go online to find others with similar health concerns.

As a result of the voluntary basis of users' contributions, self-management support through online health communities offers high potential for cost-effectiveness. Understanding the mechanisms of online health communities effectiveness, and uncovering how online communities are organised and evolve over time are key to develop and test them for effectiveness within the NHS.

The study builds on multidisciplinary collaboration between UK universities, charities Asthma UK and BLF and industry HealthUnlocked.

Cite as

Joglekar S, Sastry N, Coulson NS, Taylor SJ, Patel A, Duschinsky R, Anand A, Jameson Evans M, Griffiths CJ, Sheikh A, Panzarasa P, De Simoni A

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

J Med Internet Res 2018;20(7):e238

DOI: 10.2196/jmir.9952

Read the full paper in the Journal of Medical Internet Research

© 2015 AUKCAR