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Articles about Disclosure in Online Communities

October 16, 2014

Since presenting on the panel at Stanford Medicine X called Communicating the Experience of Illness in the Digital Age, I’ve been giving more thought on the importance and role of self-disclosure in building online health communities. I’d like to find literature on the topic and gather stories of experience from people who participate in online communities and/or manage them.

Here are a few papers that Jeana Frost, Meredith Gould and I found.

Of course, my go-to place to get practical information about building successful  online communities is Richard Millington‘s blog FeverBee. He states “... community managers … have a heavy influence over whether interactions between members turn into relationships.”  Here are a few of his key blog posts relevant to disclosure.

Prepping for MedX, I also wrote this post I want my sex life back! TMI? Or gold for online communities and their managers? which grew in richness through the comments people posted.

Do you have additional articles or stories to share about disclosure and 1) how it functions in online communities or 2) the effect of disclosure on the quality of conversation?

6 Comments leave one →
  1. October 17, 2014 10:29 am

    Hi Colleen,
    Thanks for posting this list of links to some interesting papers on this topic (the Zlatolas link seems to be dead, by the way).

    I don’t have an additional link to add, but I do have a couple of questions for you and your MedX panel team. For example, I would have loved to have seen your excellent panel include some discussion of the following:

    1. Relatively few patients are actually participating in online groups. At Inspire’s WomenHeart group (the one I’ve been a member of since 2008 – I believe this is currently the largest online community for women with heart disease) there are, as of this morning, 16,373 members worldwide. This sounds fantastic, until you remember that there are over 42 million women living with heart disease in North America alone. In fact, a 2011 Russell Herder report “Seeking Social Solace” found that heart patients (both male and female) make up barely 2% of ALL diagnoses discussed by patients on social media: http://myheartsisters.org/2011/12/15/seeking-social-solace/#more-13044

    Stats like these are often forgotten amid the usual love fest surrounding online support communities – because those who do participate assume that everybody else is just like them. Clearly, they are not.

    2. Public self-disclosure also includes those who post in multiple topic boards in the same online umbrella community. I’ll use Inspire once again as an example, where they have 218 discussion groups. It’s not uncommon to see a member posting the same very intimate details of her personal story in dozens of health topics at the same time – most of which have absolutely nothing to do with her diagnosis, question or concern, but which will likely garner more sympathy than simply posting in a single appropriate discussion thread might. So it becomes a numbers game for those take self-disclosure to the extremes of attention-seeking behaviour.

    Throw in another peeve of mine – the marketing site Dose of Digital now lists more than 350 online health forums and social media sites run by drug or medical device companies – and we have a whole whack of concerns about the reality of online patient communities.

    Many thanks to you and your team.
    regards,
    C.

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    • October 20, 2014 11:48 am

      Carolyn,

      Thank you for your thought-provoking observations. Both your points beg for more research on the role of the social web, its adoption, and how self-disclosure functions. I plan to contribute to the literature, but until then here are some thoughts.

      1. You are quite right that relatively few patients and family members, friends, supporters are participating in online communities. According to the oft quoted PEW Internet (http://www.pewinternet.org/fact-sheets/health-fact-sheet) “18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this.”

      Does everyone have to participate in online communities? Of course not. But those who do and benefit from it often share and even evangelize to others. Paraphrasing Susannah Fox, sometimes we need our love fests to gain strength from our tribes before reaching out beyond the converted. We need support to help us make the social web look less like witchcraft.

      It takes time for the social web to become a behaviour. Some people gravitate to it more easily than others. Other people may need education and guidance to become participatory, to be community members, and to understand and embrace the practices of engagement. My colleague Caroline Haythornthwaite could speak to this in more detail.

      2) As Meredith Gould said during the panel discussion (I paraphrase again), one’s offline behaviours are usually mirrored online. If a person is an attention seeker offline then it doesn’t surprise me that they find tactics to demonstrate this same behaviour online. In the case of Inspire and other platforms that offer multiple communities (PatientsLikeMe, HealthUnlocked, CarersUK, Ben’s Friends, etc.) the moderation team has the opportunity to monitor and discourage this type of behaviour. Core members can also play a role in discouraging unwanted behaviour and model participation behaviours that the community desires.

      People will be loyal community members where the perceive “membership” and sense of community, where they are influenced by the community and can influence. In the example you illustrate, does the community engage with members who post self-disclosing information that is not relevant to the community?

      PS. The Zlatolas link is fixed.

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  2. October 19, 2014 7:40 am

    My interest in this topic continues too Colleen – so much so that I have submitted an abstract which has been accepted for a conference in the UK next January on everyday ethics. I aim to explore the ethical underpinnings of using patient stories for research in a digital age. These papers will be useful in helping me prepare my talk. I remain grateful to both you and Carolyn for stimulating so many wonderful discussions.

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  3. October 20, 2014 11:54 am

    Hi Marie,

    Which conference will you be presenting at? You may also be interested in these 2 papers.

    Peter Wesolowski. Using Forums and Message Boards to Recruit Study Participants in Qualitative Research
    http://www.nova.edu/ssss/QR/QR19/wesolowski23.pdf

    Carol Bond (@cbond), Osman Hassan Ahmed (@osmanhahmed) et al. The Conceptual and Practical Ethical Dilemmas of Using Health Discussion Board Posts as Research Data
    http://www.jmir.org/2013/6/e112/

    In my opinion, there is opportunity for researchers to collaborate with community managers. Ethical research can help deepen the sense of community as many communities seek to advance knowledge. Community managers can help research gain access to willing participants. I should write a blog post and expand on my thoughts about this. To be continued.

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    • October 20, 2014 12:08 pm

      Just a PS re online communities “helping” researchers gain access to support group members: when I posted an invitation to Inspire’s WomenHeart members to participate in the important Yale Heart Study on treatment-seeking delay behaviour during heart attack, I was informed by the Inspire moderator that my post had been taken down because they do not allow research recruitment on their site – even from credible academic institutions. For-profit online communities make money by selling data about members to corporate sponsors – not giving it away for free to Yale University.

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  4. October 22, 2014 10:40 pm

    Such an important conversation, Colleen. As our digital landscape continues to expand exponentially thoughtful dialogue about self-disclosure and privacy will take on even greater importance. Thank you for the citations!

    Liked by 1 person

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