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PatientsLikeMe keeps getting more famous

Here’s the CBS News clip that ran about PatientsLikeMe last week

Of course you’ve probably already seen the Business Week article about Health 2.0 which quotes Jane Sarasohn-Kahn and little ol’ me. Cathy Arnst did a nice job, including referring people back to Jane’s most excellent piece on the Wisdom of Patients

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  2. To clarify: I have not studied the PLM population. My comments were based on my national survey research. In the national data, the most engaged patients tend to be highly educated and highly wired; people living with a chronic disease or disability are less likely – in general – to have access to the internet, probably b/c they skew older (age 50+) and less educated. Once people with chronic conditions go online, however, they are just as engaged (in some cases more so) than everyone else. (See: E-patients With a Disability or Chronic Disease, 2007)

  3. What I really liked about the piece was the discussion of “privacy” issues (really: data security, data ownership, anonymity, confidentiality issues). I’ve now heard Ben & Jamie Heywood talk about these issues, as well as David Williams, and I think one of their hallmarks is transparency. They have been upfront about their business model from the beginning and the patients quoted in this story seem to appreciate & embrace it (which continues to “amaze” non-patients).
    All this reminds me of when I first met Gilles Frydman of ACOR.org, back in 2001. When asked about ACOR’s privacy policy, Gilles shrugged and said, “Our policy is that you have no privacy.” Again, ACOR members know that going in and act accordingly.
    Arnst’s kicker quote captures it: Trevor Mundel, head of development for Novartis, said, “Patients will keep pressuring all of us in the direction of more openness.”
    (Caveat from my research: PLM & ACOR seem to be peopled by highly educated e-patients who are confident about navigating the online world. What happens when a mass health community like Diabetic Connect taps in to members’ data?)

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