Health 2.0 Communities Evolve

When Amy Tenderich was diagnosed with type 1 diabetes in 2003, she felt like she was the only adult in the world who could have something that many think of as a child’s disease. It wasn’t until she started blogging about her condition that she found out she wasn’t alone. Her site, Diabetes Mine, soon turned into one of the most widely read blogs about the disease and came to be a forum where people talk about diabetes with Tenderich and with each other. “All around me hundreds of new blogs and online communities started popping up, and I found myself in the middle of this Health 2.0 movement,” Tenderich said.

Discussions about online health communities got a lot of play at this year’s fall conference, and they were the topic of one of the opening discussions on Monday. Thomas Goetz, executive editor of Wired Magazine, Gary Wolf, co-founder of Quantified Self and Aza Raskin, co-founder of Massive Health, sat on a panel that analyzed the strategies of several Health 2.0 companies that connect groups of people online. “Community has a very effective way to get people to care about, externalize and reflect upon their choices, whether that community is a family, a work group or these ad hoc online social groups,” Goetz said.

During the segment, David Metzler, founder and CEO of OneRecovery, an online and mobile support group for those recovering from addictive diseases, presented findings that speak to the potential clinical impact that online communities can have. A recent Aetna study found that use of the OneRecovery program, which employs social and gaming features, reduced treatment readmissions by 67% with members who had been out of treatment longer than 270 days.

The result is impressive on its own, but it’s even more impressive when you consider how far participation in online social health has come in just a few years. Tenderich moderated a panel later in the day, and she pointed out that when she first came to the Health 2.0 conference in 2007, the future of online communities wasn’t clear. “Back then we were asking ourselves whether people would really engage, whether it was scalable and whether tools could be integrated into these communities to help people actually do something about their health.” The answer to all of these questions is “yes,” she said. Still, online communities have a lot of room to evolve be sure, and it remains to be seen if they’ll ever be accepted as mainstream.

One shift starting to indicate that they might is the growing popularity of online communities with health care professionals. A new example of this came Monday when Alliance Health, a social networking company, announced that it will work with the Joslin Diabetes Center, a leading diabetes research and clinical care organization. Alliance started building health social networks in 2008 beginning with a community for diabetes patients and then growing to include other groups for patients with COPD, sleep conditions, depression, chronic pain and more. Today there are 600,000 members in the diabetes community alone and almost one million people registered across all of the categories. Tenderich, vice president of patient advocacy at Alliance, said the company has always intended to include physicians on the Diabetic Connect network, but the site first needed to establish a reputation. “In the early years physicians were all super standoffish about doing anything, and now they’re licensing content to us and working with us, so the world has actually changed quite a bit in that respect in the last three years,” Tenderich said.

The idea is for Joslin clinicians to be active members in the community by commenting on patient posts and responding to frequently asked questions. “We feel there’s a chance to now bring endocrinologists and other clinicians online to engage with patients and maybe clarify things, amplify things or just kind of give it a Joslin stamp of approval,” David Goldsmith, Vice President, Corporate Development said.

Alliance isn’t the first company to include physicians in its social network. Online community HealthTap, which officially launched at the conference on Monday, already has 4,000 physician members in its network, and the number is growing, according to CEO and founder Ron Gutman. Since HealthTap built its site with physicians from the start, they are a vital component to the success of the community. From here, not only will we find out if physicians will continue to show interest in joining these types of communities, but also, if they’re willing to become as active in online health communities as their patients already are.

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Health 2.0