Managing Misbehavior in Online Health Communities

September 23, 2013
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Excerpt from JMIR publication Community Management That Works: How to Build and Sustain a Thriving Online Health Community

Excerpt from JMIR publication Community Management That Works: How to Build and Sustain a Thriving Online Health Community

online health communityMany health organizations are concerned about disclosure of personal health or other sensitive information and the proliferation of misinformation. However, if your community has clear policies, proactive community management, as well as active moderation and community participation these concerns are largely unfounded. Some communities, though, exist for the sole purpose of encouraging unhealthy behaviors, such as pro-anorexia groups [1]. I want to focus on online communities that support healthy behaviors and how they manage transgressions of their terms of use.

Clearly stated policies make it easy for moderators to modify—and in some cases remove—posts that contravene terms of use, such as commercial postings, advertisements, or impersonations; posts that relate to illegal activity; those that contain disrespectful language, etc [2,3]. For example, Macmillan Cancer Support’s online community had to deal with a member posing as a cancer patient. In a blog post, the moderation team described the transgression to the community, expressed empathy for the upset it may have caused and explained how members can protect themselves. By giving members an opportunity to discuss their reaction to the situation, the community manager created a learning moment and strengthened the community.

Community managers, moderators, and core members model behavior and can guide members who may have unwittingly shared sensitive information or misinformation. Such modeling establishes and maintains the desired tone of a community. Communities with a secure sense of community can rely on responsive self-policing to correct misguided behavior and misinformation. In fact, rather than removing misguided information, allowing and enabling community members to correct misconceptions and provide balanced debate can be a very productive bonding opportunity that deepens the sense of community and establishes the value of collective knowledge.

On hcsmca’s LinkedIn Group page, a marketing manager made a commercial post about her company’s upcoming patient experience conference that did not include patients. This contravened the community’s principle of including patients and our resolve to support “Nothing about us without us.” The ensuing conversation demonstrated hcsmca’s community cohesiveness, resulted in an informative discussion, and deepened the community’s sense of purpose and influence. Because the hcsmca community relies on Twitter for the majority of its online interactions, one might think it would be more susceptible to abuse with little recourse to correct misbehavior. However, the tight-knit nature of the community and its unified understanding of the community’s purpose guards its principles and guides the behavior of newcomers, quickly correcting or rejecting misuse.

Clinical study recruitment may be desirable in some health communities. If so, guidelines and criteria about how, what, and where to post for recruitment should be readily available for researchers to consult. Recruitment policies may change as a community matures. For example, a request for photo subjects was posted on Virtual Hospice when the community was just starting out [4]. The post was removed and the poster, who had no interest in becoming a community member, was invited to submit the request through more appropriate channels of the organization. In a more mature community, such a request may not have been inappropriate.

As these examples demonstrate, undesirable behavior does happen in online communities, but responsive community management can maintain the integrity, reliability, and value of the collective community knowledge.

  1. ‎Peebles R, Wilson JL, Litt IF, Hardy KK, Lock JD, Mann JR, et al. Disordered eating in a digital age: eating behaviors, health, and quality of life in users of websites with pro-eating disorder content. J Med Internet Res 2012 Oct;14(5):e148 [FREE Full text] [CrossRef] [Medline]
  2. ‎Sinardo H, Young C. CancerConnection Community Guidelines.: Canadian Cancer Society; 2013.[WebCite Cache]
  3. ‎Canadian Cancer Society. CancerConnection/Parlonscancer Online Community Terms of Use.[WebCite Cache]
  4. ‎Allan E. Canadian Virtual Hospice. Community Post: Help needed to reach participants for Photo-documentary book “Facing Death”[WebCite Cache]