Clay Shirkey, in his work Cognitive Surplus, talks about a group of people who band together online at PatientsLikeMe.com. As I read through this section, I realised there are a lot of similarities between this group and mine:
"Here both kinds of amateur value--sharing and a feeling of belonging--can now come to the fore in ways they couldn't even a few years ago."
"...uses the word community to denote a group...who share a specific condition, and for good reason: like any community of practice, they share information and ideas, and they produce cultural norms and support for one another. They offer a degree of moral support that the current medical system rarely offers, and that turns out to be a critical feature of treatment."
"Knowing you are not the only one going through something can itself be a huge relief, separate from any physical improvement."
"...[forum participants] can create their own forum topics for discussing whatever is on their minds."
"[The forum] aggregates [participant] data better than traditional methods because it offers [them] a sense of membership and shared effort."
"[The forum] offers lots of interesting tools for sharing, but the sharing itself is a human characteristic, not a technological one."
"[The forum] needs an openness philosophy precisely because sharing medical [(weight loss effort]] information entails risks, ranging from embarrassment to job discrimination to harassment."
"...if enough people join to make the new group seem worthwhile, that will encourage still more people to join, and this feedback loop increases the value of the [medical] information available in aggregate."
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