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The Emerging Diabetes Online Community.

I’m really proud of this paper, The Emerging Diabetes Online Community, written with Marisa Hilliard, Jeff Hitchcock, Tamara Oser, and Korey Hood, about the diabetes online community and the importance of peer-to-peer support between patients on the Internet.

The official abstract: “Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.”

There are a lot of friends and colleagues mentioned in this paper, like Children with Diabetes, Scott Johnson, Diabetes Mine, Texting My Pancreas, the CGM in the Cloud group, and several others.  Actually, that’s one of my favorite features of this paper, noticing how many of these resources are created and maintained by people I consider friends.  Speaks to the true connectivity of the Diabetes Online Community and how what we provide for one another is hard to quantify but easily recognized as “important.”

It continues to amaze me, seeing how much this community has changed and grown and evolved since I ventured online ten years ago.

To download the paper, you can click on this link and the PDF is free.

4 Comments Post a comment
  1. I wonder if people recognize that the embryo of the DOC was there at least since I was diagnosed in 1992, and I don’t know how much before. In the olden days of Usenet, there was misc.health.diabetes, and alt.support.diabetes, and I don’t know what others. There were also mailing lists, such as the Lehigh Diabetes World list, which still exists, but is inactive. In its heyday, it was a busy place, with as many as 100 messages a day.

    These were wild and woolly places, and there were people on soapboxes, and angry exchanges and hurt feelings, but there were also enduring friendships, and a lot of education going on. It was not as formal as nowadays, and there were no bloggers or activists who had greater influence than the ordinary folk, but there was also a sense of equality and the chance for anyone to speak their mind, both good and bad.

    As a veteran of those days, I’ve watched the DOC grow, and I like the direction it’s heading, but also hope we give recognition to the founders of the community.

    07/17/15; 2:52 pm
    • Wow, I’d totally forgotten all about misc.health.diabetes and alt.support.diabetes! I suppose THAT was truly my first experience with a diabetes online community. Unfortunately, Usenet was such an open platform that it got overrun with spammers and snake oil salespeople that its usefulness fizzled out. But thanks for the memory!

      07/17/15; 8:55 pm
  2. Kerri, Marisa, Jeff, Tamara, and Korey – thank you all SO much for your hard work and time spent on this. This is a very important step in, as you so very well state, Kerri, showing what we provide is hard to quantify but recognized as important.

    And a really big huge giant thank you to everyone in the community. You all have changed my life in so many positive ways, and without you this sort of thing wouldn’t even be happening.

    Thank you.

    07/17/15; 3:07 pm
  3. This is an exciting document and I’m so grateful to the team that produced it. Excellent work, KS, MH, JH, TO, and KH!

    07/17/15; 6:20 pm

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