Quick update on moving my data

A few items before I head off to the day job:

  • As my hospital’s CIO John Halamka posted Monday, we had a concall Wednesday night. He, Roni Zeiger of Google, my physician Danny Sands and I spoke for an hour about this entire broad topic.
            It was candid, clear and constructive, though I must say there were some things that had to be said several different times. :–) In the end, I believe the right decision was made: the hospital was decided that “billing data … is unreliable for clinical history, and it was a mistake” to send it to Google Health. They will no longer do that.
            Congratulations and thanks to John for being open and hearing what the world was saying!  As Microsoft’s Sean Nolan asked earlier in the week, “how many other medical institutions out there display this kind of transparency? Kudos are deserved here.”
  • Sean is chief architect for Microsoft HealthVault.  He wrote a great post “This just in: sharing health data is hard.” (Anyone who works with data transfers will get the “Wow, whoda thunk it??” joke.) He superbly captured my state of mind Monday and Tuesday, watching the media swirl that arose around the Boston Globe article: “People are having a grand time drawing conclusions from all from this, mostly trying to decide ‘who sucks’ — is it Google, or BIDMC, or the insurance companies, or lousy doctors, or all PHRs?” Kudos to the astute John Moore of Chilmark Research for his post, which steered me to Sean’s.
  • Sean’s post also describes how HealthVault first imports data into a sort of “holding pen” where you can pick through it and decide what’s sane, etc., before moving it into the real health record. That sounds interesting.

EVERYONE, LISTEN UP:  I DID NOT JUST SAY HEALTHVAULT IS BETTER!  I haven’t even tried it yet.  There are many personal health record systems out there, and I have no intention of doing a comparative review of them all, much less declaring a winner. I am not freakin’ Consumers Union (though I am a member) with a staff of hundreds, I’m just one patient doing this as an EVER so stimulating hobby, doing what YOU should do, which is get your fingers into YOUR data.

Speaking of which, my doctor very generously combed through all of my data in PatientSite, every shred of it, looking to see what could be traced to its origin and what could not.  Sometime soon I’ll be writing about what he found.  It was really interesting to me.

I had to deal with a bunch of arcane abbreviations but that’s not difficult – it was easier than some instruction booklets I’ve seen.  (You can do it too.)  I learned a lot, and we found a fair amount of other insanity – like an armpit cyst condition (hidradenitis) that was supposedly diagnosed during an abdominal ultrasound.  Magic!

I hope to post about all that this weekend. And I hope you (yes YOU, the person in YOUR underwear, if you’re wearing any) will contact your doctor and ask to see the whole megillah so YOU can take responsibility.

See, if we’re going to do this Participatory Medicine thing, in which patients play an active role in their care, we can’t just sit back and hope “the other guy” is doing their part perfectly. Be an e-patient: empowered, equipped, engaged and enabled.


Thanks again to Roni and John, two MDs who listened, heard, and responded. Let this be a model for the new world we’re creating: collaborative, participatory healthcare. And thanks especially to Danny Sands, one of Tom Ferguson’s original e-patient doctors, without whose assistance I wouldn’t have been able to write most of this story. If knowledge is power, Danny’s an empowering guy.

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Posted in: e-pts resources | hc's problem list | medical records | positive patterns | pt/doc co-care | reforming hc | trends & principles

 

 

Comments

6 Responses to “Quick update on moving my data”

  1. ePatientDave says:

    Quick post / update on the “moving my data” story (e-patients.net): http://bit.ly/mveLO

  2. Hello Dave,
    Thanks for bringing some closure, if you can call it that to this issue – particularly bringing to surface the discussion and outcome of your confcall with all significant parties.

    Love the closing as well. Yes, we as consumers need to take on more responsibility and maybe, just maybe, such stories as yours and others will actually get some of these large megalithic systems to begin listening and changing their practices.

    Kudos to BIDMC for recognizing that they made a mistake. Such transparency, and honestly leadership in the healthcare sector is warmly welcomed.

    Keep up the good work Dave, it is a very worthy cause.

    -John

  3. SusannahFox says:

    RT @ePatientDave Quick post / update on the “moving my data” story (e-patients.net): http://bit.ly/mveLO

  4. bobcoffield says:

    RT @ePatientDave Quick post / update on the “moving my data” story (e-patients.net): http://bit.ly/mveLO

  5. [...] an EVER so stimulating hobby, doing what YOU should do, which is get your fingers into YOUR data. Article e-Patient Dave, e-Patients.net, 17 April [...]

  6. Luis Saldana says:

    RT @bobcoffield RT @ePatientDave Quick post / update on the “moving my data” story (e-patients.net): http://bit.ly/mveLO

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