Wednesday, September 9, 2009

Help create my talk at Medicine 2.0 in Toronto: "Gimme my damn data"

Yes, that's the title of my talk to open the Medicine 2.0 Congress in Toronto next week. Yes, it's the published, advertised title. I believe patients should have complete access to their health data.

Whose data is it, anyway? I said that in May (in my post on "meaningful use"), I was one of the first to endorse the Declaration of Health Data Rights in June, and it was the crux of an ad hoc talk I gave in Washington in June.

But we certainly aren't there yet. Please help me create my talk. What would you want to discuss in Q&A?

Last night I tweeted:

I intend to make a forceful case for it, and I'm not aiming to preach to the converted.

So the question will be, what could I say that could make any difference - move the unmoved?

I have no interest in polarization; my schtick is to move people's point of view.
A side note -

This will be my first-ever keynote to open a conference. Many thanks to Gunther Eysenbach for inviting me. Gunther is the man who, years ago, did the original study that failed to find any cases of "death by googling," an evidence-based finding that opened the door to patient engagement. Today he is publisher of the Journal of Medical Internet Research.

So, here's my question: What could be my "call to action" as the conference starts? (The full conference program is here.)

See, my secret for mid-conference talks is to "listen to the room" and see what needs to be said. But when you're the first guy out of the box you can't do that. :)


  1. Dave,

    Speak from the heart. Your core message is spot on. Without the Patient there is no medical record.

    In the consulting world you don't get paid to produce a report and then refuse to share the result with your client. Equally the information consultant's compile typically comes from the client.

    When you translate this to the medical world the Consultant believes they can charge but keep the results.....

  2. Dave,

    Somehow... we need to get to one medical record. Something that truly and honestly represents all of your healthcare data in one place. The patient should own this data. However, the patient should not be solely responsible for the data, as he/she should not be expected to understand the contents. Therefore, the responsibility for the integrity of the data remains with the healthcare team.

    There are many reasons why this is not happening. But the big hurdles to get over is privacy and security. Until these are tackled, you are dead in the water.

    Best Regards,


  3. Dave,

    We have to overcome FEAR. Provider's fear that "the patient won't understand what I wrote." Fear that the patient will use the data to sue. Fear that the record will reveal real mistakes or omissions that will come to light only by outside review. Fear of critique by others. Fear that the patient will finally see everything that their insurance is paying for and ask "what is all this?" Fear that treatment (trade) secrets will be revealed.

    I think we need to determine what fears we need to mitigate in order for institutions to open up. Perhaps a type of non-disclosure agreement between patient and provider -- HIPAA largely prevents providers from sharing patient data, but the record is, at least in a small way, provider's data too. I would explore ideas about what sort of protections providers and institutions want in exchange for being more open.


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