Patient-driven health care

VRM has been a cause in health care far longer than the term Vendor Relationship Management has been around. (For ProjectVRM, that’s been since late ’06.) And, as a category within VRM, health care could not be larger, more personal, or more contentious. Just yesterday Paul Krugman posted a column titled Patients are not consumers. Can’t get much more VRM than that.

Lately I’ve been urged to front-burner health care as a VRM topic, and I’m obliging here by recommending it as a topic for IIW#12, coming up the first week of May. The top urgers have been , Jon Lebkowsky and “.

Brian has been active on the ProjectVRM list, and his latest occupation — CTO of the — follows several years of involvement with and the Alembic Foundation, both at the forefront of patient-driven health care. Here’s a talk Brian gave last summer at OSCON, and some more stuff about Alembic.

Jon has been organizing meetups and conference calls on VRM and health care, as well as taking a lead role on behalf of the topic on the ProjectVRM list. ProjectVRM and e-Patients is a good sample. This slide deck also deals with the issues.

Adrian writes HealthURL, takes the VRM position in his postings on The Health Care Blog, and has been active in our workshops at Harvard., hosted by the This post, for example, has five helpful links (and lots more where those came from):

The debate between provider-centeredand patient-centered health information exchange is still very much with us. Recent progress with the Direct ProjectBlue Buttonand Kaiser’s donation of terminology suggest a trend toward simplicity and open-source collaboration as essential catalysts for health information exchange.

Dave recently gave an outstanding talk at TEDx in the Netherlands. (Pull quote: “patient is not a third-person word.”) Dave’s blogroll is also a trove, so I’m dropping it right in here:

Dave and I got on each other’s radar several years ago after he picked up on my Patient as a Platform post. Everything I wrote there still stands. What’s changed is my own hope for some progress on this whole front. In the past I avoided health care as a VRM topic, for two reasons: 1) I saw other people carrying the ball very well, and 2) I wanted to see results in my lifetime. Thanks to work by people like the four mentioned here, I have hope for that.

Just got an email from Dave, with these additional notes:

The monster-size issue in healthcare is that we’re pre-Copernican-shift.

The establishment completely doesn’t get it:

  • Feb 2011 conference session at HIMSS, describing the shift as if it were new:
    • HIMSS is the huge health IT association – 30,000 members attend the conference.
    • But here is a 2007 book that cites the shift, and Microsoft cited it often when HealthVault launched in late 2008 / early 2009.

Our pre-Copernican status makes it really hard to pick up your marbles and switch vendors. Your marbles, of course, is your carcass plus your records about it.

(Another factor is the relationship with a trusted physician, who often has relatively little mobility.)

Liberating our records:

I mentioned the Blue Button “download my data” initiative, which is the first truly disruptive effort to liberate our data. I say “disruptive” in the Christensen sense – it gets the data out of the hands of the currently dominant party (the suppliers – docs and hospitals) so innovators can pounce on it and find things to do with it.

At the Markle Foundation meeting last May where Blue Button was conceived, one question from the establishment was “Do people really want this?” The latest stats from the VA say yes. An email from Rachel Lansford, special assistant to VA CTO Peter Levin:

We measure unique registrants and the number of download requests they’ve made. We do collect these stats from beginning of Blue Button in August 2010.

Here are the latest stats as of April 16, 2011:

  • Unique total registrants for VA’s Blue Button: 218,142 (8/29/10-4/16/11)
  • Download requests: 473,510 (8/29/10-4/16/11)

n  PDF downloads: 40,858 (03/19/11-04/16/11) (new feature in March release)

VA is just one Federal partner offering Blue Button. DoD, who recently updated their [Blue Button dataset] to include lab results, and the Centers for Medicare and Medicaid Services offer the Blue Button to their beneficiaries too. The total unique registrants for Federal-wide is about 300,000 users.

(She says August; it was announced publicly in October.) 300,000 users in 6-8 months? I’d say some people are interested. And note that there are multiple downloads (473k downloads, by 218k unique users.)

Just the start

Mind you, downloading a blue button dataset is just the beginning, because it’s far from a comprehensive medical history. But it’s a start – the first start – at liberating a large dataset. As I said in a talk in DC last June, to innovators, data is fuel. And I expect this is the start of a new ecosystem.

As a trivial first example, see the TEDMED talk by Wired editor Thomas Goetz on redesigning medical data:, and this fabulous Wired article from November:

Today’s norm is totally not patient-centered: rows of stupid, unhighlighted data, with no call to action, no nothing. It’s easy to miss anything important, and disempowering to all (including the busy physician). The redesigns Goetz showed in the video (e.g. around 11:15) and in the Wired article use ordinary good design to draw attention to what you need to know.

The only reason we’re all not getting this kind of result today is because we’re pre-Copernican shift. The people at the center of the universe today don’t mind getting what they’re getting, and the rest of us.

Please let me know other links and sources I should put on this list.





  1. PJ

    I had this idea awhile back:

    * Patients get a USB stick. (possibly an append-only device)
    * They give said device to the doctor when they go visit; doc can update their local-records cache (legislatively required to be HIPAA compliant) from the stick
    * At the end of the visit, doc updates the records on the stick.

    Letting the doctor cache the stick contents for some period of time lets the doctor work a bit more asynchronously (ie. they don’t have to have the patient’s stick in their posession, presumably with the patient in the waiting room)

    Test results, etc, become a matter of : go to lab facility, get tested, they update your stick, you take it back to the doctor’s office and let them take a new update from it.

    All your records are in your control.

    Cryptographic signatures are easy to add if/when desired.

    I’ve actually thought of just doing this myself – scan all medical records onto a USB stick and offer them to my doctor. PDFs are legible, and though it’d still have the ‘stack of paperwork’ issue, at least things like old X-rays (pre and post-op, for instance) and such would be preserved for future perusal.

    Humorously, the idea for this came from the old Patrick Swayze movie ‘Road House’ where the itinerant bouncer, upon being stabbed in the shoulder in a fight, shows up at the Dr’s office with a file folder of his medical records.

  2. Joe McCarthy

    This sounds like an exciting, encouraging, empowering and engaging project – an e-project … for e-patients.

    I wanted to offer another perspective that may be interesting and useful in this context: a blog post on Why Patients are Not Consumers by @movinmeat, an ER physician and administrator living in the Pacific Northwest, which highlights issues such as the necessity of health care, the asymmetry of info and the concentration of power.

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