The fluidity of Health 2.0 communities

Writing on iHealthBeat, Dr. Thomas H. Lee describes the emerging world of online health care communities such as Daily Strength and Patients Like Me. He acknowledges their value but argues that just as Friendster was quickly replaced by MySpace, which is now being overtaken by Facebook, the early Health 2.0 sites may face a similar fate. Rapid technological change, shifts in platform (e.g., from desktop to mobile) and changes in social context will keep these sites in constant flux:

Someone could be defined by their friends in one year, then by their health support group in another. Context switching generates a whole different set of needs, by which some sites might become preferred over others.

This is true as far as it goes, and is particularly relevant for sites like Daily Strength that focus on Friendster/MySpace/Facebook style activities like sending hugs. That kind of thing is going to get old in a hurry. If you don’t believe me, go to the people page on Daily Strength (you’ll have to sign up) and look at the Top Huggers.

  • NannaB with 2000 hugs –45 yo female with fibromyalgia
  • troubled2 with 1584 hugs –27 yo female with Paranoid Personality Disorder
  • missymoomoo with 1230 hugs –36 yo obese female
  • man18 with 1164 hugs –18 yo male with Obsessive Compulsive Disorder and Depression

Remember folks, a small number of users generate the majority of content on sites like this. If my company’s valuation were based on the rants of these individuals I’d be worried!

Patients Like Me is really quite different than Daily Strength. Unlike Daily Strength users, who may easily “be defined by their friends in one year, then by their health support group in another,” Patients Like Me focuses on patients with life-threatening illnesses including ALS, MS, Parkinson’s and HIV/AIDS. Although it would be nice to think that an ALS patient could be defined by something other than their disease next year, it’s not really possible. The same holds true –though in some cases to a considerably lesser extent– for the other illnesses.

In the ALS forum, Patients Like Me users plot their decline in pulmonary function toward death over a period of a few years. They share all the detailed information they can to help one another reduce the slope of decline. The barrier to dropping out and abandoning their peers is a lot higher than for the OCD, paranoid, obese or merely sad patient who suddenly finds something else to do with his or her time…such as attacking me for being insensitive.

October 23, 2007

6 thoughts on “The fluidity of Health 2.0 communities”

  1. Thanks for shining the spotlight on what we are doing at PatientsLikeMe. The kind of sharing done in our communities extends the definition of the patient beyond their disease to include the quality of their living, and provides a way for their peers and caregivers to provide information and emotional support that is needed in the face of diseases that have traditionally isolated those who experience them.

    Our HIV community project is up and running and we are looking for Charter Members. If folks are interested, please e-mail us: and tell us you would like to join the HIV community.

  2. Met with one of the founders of PatientsLikeMe yesterday. Interesting model/approach that they have and has some real potential to really help people with serious chronic diseases, and secondarily the research community. The challenge, however, will be to keep people coming back and contributing to their respective community.

    Do like what they are doing but the long-term vibrancy and thus viability remains to be seen.

  3. Health 2.0 is derived from the term Web 2.0, which implies a 2nd generation/release of the Internet.

    The ‘2.0’ part was established within computer programming – as a new edition of a an application is released, it is common practice for the programmers to add an incrementing number at the end of a program’s name, to label the new version.

    Web 2.0 implies the ‘2nd release’ of the Internet, which of course is not based on anything concrete. The Internet being made up of millions upon millions of interconnecting computers running lots of various programs, but is more of a concept to describe the type of programs/applications/functionality one can now locate on the Internet.

    The Internet was initially complied of mainly static pages of data. Soon to follow was email, web forums and chat rooms where discussions could take place. Web 2.0 refers to a trend on the Internet that saw a step forward in the way users conduct communicate over the Internet, which includes the use of blogs, videos, podcasts, wikis and online communities where people with common interests get together to share ideas, media, code and all types of information.

    Web 2.0 technologies such as social networking, blogs, patient communities and online tools for search and self-care management look as though they will permanently alter the healthcare landscape indefinitely.

    As with Web 2.0, there is a lot of debate about the meaning of the term ‘health 2.0’. The Wall Street Journal recently attempted to define Health 2.0 as:

    “The social-networking revolution is coming to health care, at the same time that new Internet technologies and software programs are making it easier than ever for consumers to find timely, personalized health information online. Patients who once connected mainly through email discussion groups and chat rooms are building more sophisticated virtual communities that enable them to share information about treatment and coping and build a personal network of friends. At the same time, traditional Web sites that once offered cumbersome pages of static data are developing blogs, podcasts, and customized search engines to deliver the most relevant and timely information on health topics.”

    While this traditional view of the definition imputes it as the merging of the Web 2.0 phenomenon within healthcare. I personally believe it’s so much more. In my opinion, Health 2.0 goes way beyond just the permeant social networking technology to include a complete renaissance in the way that Healthcare is actually delivered and conveyed.

    Source –

  4. I generally agree with your take on this. There needs to be real substance to a social health application for it to grow and play an actual role in improving health, much less become a successful business. As we enter this era of social networking platforms, even the fundamental architecture of social health apps will be challenged.

    PatientsLikeMe appears to have just the right idea for a successful social app in the niche they occupy. The way they provide their users a compelling interface and framework for contributing and sharing detailed medical data is remarkable. From this social activity may spring new knowledge, in addition to breaking the isolation of those of who suffer these conditions.

    Over a decade ago, I was at Boston Univ School of Public Health where I was involved in the startup of another social health application, QuitNet helps smokers quit smoking through a combination of social support, expert coaching (online & telephonic), personalized content, and medication (nicotine patches, etc) and compliance. The quirky QuitNet support community of early years survived our efforts to commercialize the program (spun out of BU in 2000 and sold to Axia Health Management in 2005 and then Healthways in 2006). The community continues to thrive, despite an aging feature set and user interface. Its role in driving outcomes has been demonstrated through a series of prospective and retrospective studies. With over 100 contracts with state governments, employers and health plans, the business is growing fast.

    Still, the Web is changing faster. How therapeutic communities like QuitNet and PatientsLikeMe will exist in a world dominated by social utilities and platforms used by billions of people is the next challenge. Using social networking to drive health outcomes at scale will require a far more sophisticated and decentralized architecture.

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