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How do you manage misbehavior in online health communities?

September 20, 2013

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

Man showing expression of surprise, aghastMany 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 for online communities associated with reputable organizations. 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]
5 Comments leave one →
  1. September 20, 2013 10:35 pm

    Hello Colleen and thanks so much for this trip down memory lane, back to the heady days of those Linked In post-fuelled discussions six months ago in which so many of us did our darnedest to convince the organizers of the National Forum On Patient Experience to consider including actual real live patients in their event’s agenda. I was inspired to hijack your topic slightly here to update you on the results of such an “informative discussion”.

    Your timing is impeccable, since this conference is happening next week in Toronto (Sept 24-25th).

    But despite the convincing arguments that we offered free of charge over and over and over to conference organizers about the importance of concepts like ‘nothing about us without us’ blahblahblah, it seems that our words may have fallen on deaf ears. Even the plea from Dr. Larry Chu himself – the poster boy for hosting world-class conferences like Stanford University’s Medicine X, in which his ‘ePatient Scholars’ are given top billing “in the audience, onstage, and at the microphones” – failed to convince the organizers of a conference all about patient experience that they should include, well, you know, patients… Why did we even bother trying?

    On the detailed conference agenda, I do see lots of hospital administrators and CEOs and people with job titles like “Director of Patient-Centred Performance Measurement & Improvement” who will be the featured speakers. In fact, out of the 32 speakers listed, only one appears to qualify even remotely as a patient (well, at least her parents were patients – I guess that’s close enough) – unless the organizers are pulling one of those annoying “we are all patients” defensive quips.

    The end result saddens me, as it now appears to nullify the valid voices of so many who tried to make a dent in moving patient inclusion from buzzword to reality.



  2. Editor permalink
    September 21, 2013 11:57 am

    Reblogged this on Health Care Social Media Monitor and commented:
    Important guidelines on how to handle undesirable behavior in online communities


  3. September 22, 2013 7:37 am

    Carolyn, I appreciate your comment and bringing us back to the topic of including patients.

    As they say, “You can bring a horse to water, but you can’t make him drink.” In the context of this blog post, our writing to the organizers of the conference did solidify the community persona of #hcsmca, strengthen our sense of community and demonstrated the international reach and influence of the community membership. That the conference organizers did not regard our collective wisdom and put it to use does not devalue it.

    Personally, I think it matters a lot that we “bothered”. And we need to keep on bothering. Yes, the end result of this particular example saddens me too, but I resolve that #hcsmca will continue to herald the “Patients Included” mandate embraced by all the advocates who participated in the LinkedIn conversation And I applaud you for the work you are doing in this regard. We will not remain unheard and once heard, actions will follow.



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