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Just trying to make stuff happen

Making real health care happen

So now it’s time to put lessons to work. The Patient as the Platform is my latest post over at Linux Journal, and it proposes something that goes beyond merely giving patients control of their health care records. (As do, say, Google Health and HealthVault.) Specifically,

I believe that having a data store for health records is a necessary but insufficient condition for the true independence and control required for each of us to be the point of integration for the health care we get, and the point of origination for controlling that care — for getting second and third opinions, for summoning data across bureaucratic boundaries, for actually relating to the systems that serve us, rather than serving as dependent variables within them.

For patients to become platforms, we need more tools and capabilities that are native to the patient. All of us need to be able to walk around the world with the ability to jack into any health care system and drive it. How? I don’t know yet. I’m still new to this. But I do know that these are capabilities we need to add to ourselves, as independent drivers of health care services. And that these must be based on free and open standards and code.

The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.

It’s a angle, of course. And it concludes with the same pitch I’ll give here. If you’re interested in putting a shoulder to this boulder, or to weigh in on any of the other development efforts we have underway, come to the VRM Workshop on July 14-15 at Harvard. That page is short on details, but we’ll be filling them in shortly.

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11 responses to “Making real health care happen”

  1. Major Fun Avatar
    Major Fun

    Yes, and again yes. This is exactly the way to harvest the learning you received from your in-depth hospital experience. Putting it into context, connecting it to the work you’ve done and the insights you’ve gathered all these many years, brings it into something we can actually grasp, into something we can act upon. One more of your many victories, o aptly named Doc.

    Reply
  2. John Caddell Avatar
    John Caddell

    Doc,

    Following updates of your recent hospital stay on Twitter and on the blog brought back memories of when my child spent two weeks in hospital with a serious condition before he was three months old. It was truly an eye-opener for us in terms of the ambiguity, uncertainty and lack of order of the medical system.

    To ensure our son got what care he needed, and no more, my wife had to be the “systems integrator” for his care. [No one in the hospital, strangely, owned this role.] The doctors came and went, and the unifying data set was the “chart.” More than once, we had to correct a new doctor whose quick scan of the chart and glance at our son led him/her to false conclusions in the absence of the moment-to-moment context that allows the chart to make sense. My wife also had to combat the intervention bias that was present in almost every physician we met there.

    Apart from that, the chaos that is the hospital/physician/hospital/lab/insurer “value chain” led to a ton more side effects–less life-threatening but also longer-lasting.

    If ever there were a system that needed VRM, this is it.

    regards, John

    Reply
  3. Francine hardaway Avatar
    Francine hardaway

    I wish I could go to Harvard to that workshop. I have been working with a foundation (St Lukes Health Initiatives (slhi,org) on issues like this for years. The patient has to be part of his own supply chain, for sure. Google knows this, but they are having problems with people like HIPAA and the system itself in getting the information into the control of the patient, Craig Barrett and a bunch of enterprise people are also working on this through Dossia. I will put a shoulder to this boulder with you. I just don’t have time to type all my thoughts about this right now, but give me a call.

    Reply
  4. Stephen Lewis Avatar
    Stephen Lewis

    D.

    Apropos of your post, here is one from the archives on one of my blogs (written not long after last summer’s VRM meeting in Oxford) on one of the accidental benefits of the momentary chaos of one small country’s medical-services-system-in-transition: the unwillingness of physicians and dentists to hold patients’ records and the resultant placement of records in patients’ own hands (and messy desks!). The link: http://tinyurl.com/5djcgr .

    S.

    Reply
  5. Judi Clark Avatar
    Judi Clark

    My experiences corroborate John C’s story above. Several friends have traveled the paths through extensive treatments, chemo, radiation, experimental things not covered by insurance, and more. When these friends had a close family member acting as a “systems integrator,” they always had better care.

    When I was in the hospital for appendicitis, I was my own systems integrator and thankfully it was a single problem to resolve.

    There are two parts to this problem. The challenge to the medical profession is that it will became more transparent (bonus to us). The benefit in this moment is that, for those of us who have been in the hospital lately, we likely recognize that we’re not that far away from social acceptance of a system that moves recognized control to our hands.

    Thanks Doc.

    Reply
  6. Terry Heaton Avatar
    Terry Heaton

    Count me in on any work required on this matter. I’m having a couple of routine procedures done next week, and the pre-op waste of time could mostly be resolved with a thumb drive.

    Reply
  7. Doc Searls Avatar
    Doc Searls

    Thanks, Terry. Look forward to more from you. Stay well and keep in touch, too.

    Reply
  8. Mark Scrimshire (ekivemark) Avatar
    Mark Scrimshire (ekivemark)

    Doc,

    I have been following your trials and tribulations and wish you a speedy return to full health. It is a true mark of your character that you are turning the experience in to something positive for the rest of us.

    I am fully behind you in advocating a user centric view to health. It is that drive that prompted me to hold HealthCampMd. I am now organizing HealthCampDc and HealthCampNy. Check them out at http://barcamp.org. If anyone plans to be at the Web 2.0 Expo in New York in September then join in the HealthCamp meeting we plan to hold as part of the Web2Open stream.

    I am going to see if I can attend the VRM workshop but even if I can’t I am willing to push the Health Agenda with you in any way I can.

    Reply
  9. Mike Warot Avatar
    Mike Warot

    It seems to me that having one doctor for a long time, as was past practice, made things much safer and more efficient (assuming the doctor was competent). Any time a system (such as health care) gets modified some knowledge embedded in it gets lost.

    We’ve gone from a craft tradition, to an production line model. We used to have doctors who took care of their patients, and knew each one of them intimately. Now we have a massive system that treats both doctors and patients as generic items.

    We lost too much, it’s time to reclaim our identities, both patients and doctors and nurses, etc.

    Reply
  10. Taylor Walsh Avatar
    Taylor Walsh

    There is another point where this question of patient-centric care can be amplified and defined. That is at the nexus at which complementary, alternative and integrative care approaches are crossing into conventional settings. The adherents and practitioners of CAM therapies, in fact, are the original healthcare hackers, having been at work in the field or using therapies for more than 30 years (not including the 3000 years some of these therapies have been used around the globe).

    More to the point for this conversation, the adoption of these approaches — now reaching into medical schools, hospitals, MD offices, pharmacies, employer health plans (following $1.5 billion in research from NIH since 1992) — are based in large part around addressing the fundamental question “what is health?” That conversation is not taking place in the so-called national dialogue on health care. It is taking place where docs and practitioners and non-traditional healers are considering the whole patient, his or her traditions and beliefs, and in essence taking the diagnostic time that has long since evaporated in most settings and then applying an appropriate treatment, whatever its origins.

    The technologies that will plug us into the health web are well and good, and of course a quintillion dollars is being ponied up for the solutions to come. But we also need a concurrent integration of new thinking about health and about wellness as these personal health platforms get dropped into the global net.

    There is a natural symbiosis between Health 2.0 and Integrative Medicine that I hope we can start folding together as both these forces influence how the work of health is conducted.

    Reply
  11. Carl E Rowe Avatar
    Carl E Rowe

    Back in 1977, Kjell Samuelson and I proposed a patient centered health care database card imprinted with all pertinent information about the person so that we could track their disease state(s) and prescription drug
    usage.It was in answer to an FDA RFP on patient specific phase 4 drug information-looking for small events in big populations. We did’nt get very far. Although the technology existed-the patient privacy problem-along with the absence of a universal reader for the card-doomed the effort.
    We are much further down the road now in time-yet we are still debating the need for and type of systems to handle patient centric or specific health care data.
    I shouldn’t be suprised-after all- it was 40 years ago a man walked on the moon.

    Reply

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