{"id":6688,"date":"2010-07-20T23:00:27","date_gmt":"2010-07-21T04:00:27","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=6688"},"modified":"2010-07-20T23:16:11","modified_gmt":"2010-07-21T04:16:11","slug":"dear-white-house-the-personal-data-challenge","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/07\/dear-white-house-the-personal-data-challenge.html","title":{"rendered":"Dear White House: The Personal Data Challenge"},"content":{"rendered":"

Gary Wolf of Wired <\/em>has posted a whizbang write-up that came out of a whirlwind one-hour 12-way Skype chat about personal health data. Sound frenetic? It was. (I participated. It was, well, 12-way.)<\/p>\n

I can’t imagine how to model what happened, except to say that it was wired.<\/p>\n

It grew out of a request from the people at the Community Health Data Initiative, which (as we reported here<\/a> last month) is opening vast amounts of HHS data for innovators to get at. (And innovators are doing so, fast, as that post describes.) Here’s how Gary started his write-up:<\/p>\n

Earlier this summer Alexandra Carmichael, who is the founder of CureTogether as well as our director here at the Quantified Self, was in Washington for a meeting in President Obama’s Office of Science and Technology Policy (OSTP)<\/a>. When Alex came back she posted a report<\/a> about her meeting here on the blog, and invited us to answer some questions from one of the President’s policy advisers. …<\/p><\/blockquote>\n

Specifically, we in the chat were asked three questions:<\/p>\n

    \n
  1. How to deal with or integrate personal health data into the data warehouse they’re building<\/li>\n
  2. What should the government do or worry about in the health data space?<\/li>\n
  3. What are the top things to focus on that work to increase national health?<\/li>\n<\/ol>\n

    To understand Gary’s takeaways, you’ll have to read his whole post<\/a> – take a few minutes, it’s stimulating.\u00a0 This extract summarizes why my antennas are twitching big-time about this:<\/p>\n

    ________<\/p>\n

    Personal health data is a major, positive force for transforming the health care system.<\/strong><\/p>\n

    Three important trends converge here:<\/p>\n

      \n
    1. A consensus that self-care is important in achieving national health goals.<\/li>\n
    2. The failure of traditional medical record keeping to accurately describe patient experiences; much less the full range of living conditions relevant to health.<\/li>\n
    3. The rise of new systems to collect and understand personal data. …<\/li>\n<\/ol>\n

      ________<\/p>\n

      Ain’t that the truth??<\/p>\n

      The great technical challenge is, he continues, that since personal health data (of heaven-only-knows-what) has no universal structure, it “looks messy from a traditional clinical or laboratory point of view.” But (I’ll break his counterarguments into a numbered list),<\/p>\n

        \n
      1. Powerful techniques for analyzing messy data already exist, and they are rapidly improving.<\/li>\n
      2. Tools for collecting personal data are also getting better.<\/li>\n
      3. Self-tracking is becoming more popular.<\/li>\n
      4. These factors are mutually reinforcing: stronger analytical techniques; more accurate and consistent collection; and vastly increased volumes of data create a new landscape of public health knowledge.<\/li>\n<\/ol>\n

        Landscape? I’d even say ecosystem – as innovators mash up data heaps in unpredictable ways, extracting new metrics and new knowledge, the ecosystem becomes richer and thus more attractive to more innovators.<\/p>\n

        I want this stuff. I love this stuff.<\/p>\n

        “Virtual warehouse”? A question and suggestion –
        \n<\/strong><\/p>\n

        The one thing I didn’t understand in Gary’s post is the idea of a “virtual warehouse” for the data. I know something about databases but I’m no wizard at it. If “virtual warehouse” means the data will be stored in all sorts of places, then I see another vital enabling role for government to play: provide (or support creation of) a replicable platform, so people and communities can “tear off a copy” and run with it, without centralized management of who does what.<\/p>\n

        Patient communities spring to mind: what if every ACOR group and every other patient community had a freely available, open platform for storing whatever sort of data they find useful?<\/p>\n

        Providing a platform like this would parallel how HHS\u00a0 has enabled wildfire entrepreneurial use of data via CHDI, also without centralized management. And best of all, it would empower patients (the most under-utilized resource in healthcare) to create their own value and pursue whatever information they find useful. That’s participatory, it’s empowering, it’s enabling. It’s e.<\/p>\n

        I love this stuff. And I bet Doc Tom Ferguson would, too.<\/p>\n

        (Speaking of which, I just discovered a gem <\/em>in Doc Tom’s attic. Look for it later this week.)<\/p>\n

         <\/p>\n","protected":false},"excerpt":{"rendered":"

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