That’s a direct quote from Paul Tang, of the Palo Alto Medical Foundation, at last week’s meeting of the Health IT Policy committee, of which he is vice chair.
Dr. Tang was riffing on an e-Patient Dave quote, which I read during my testimony:
I want innovation at a rate that resembles the rate of improvement in cell phones and iPods: I want to think, in 2011, that the healthcare tool I started using in 2009 is, well, “that’s SO 2009,” just the way many people think about their cell phones.
It’s a good meme, made better by Latanya Sweeney‘s testimony at the end of the day which asked the committee to start digging in to infrastructure design, not just abstract policy discussions. Here are some quotes I captured:
“The Advance HIT Project (advancehit.org) launches Monday: our goal is to ensure tech decisions are well-informed. My goal was to leave you with hope. Barring that, some architectural designs.”
“I wish that there had been a meeting that included 5 ways to design the national infrastructure, then we asked panelists how their privacy concerns mapped onto those 5 designs.”
Keep following the work of this committee. Their debates go to the heart of participatory medicine: whose data is it? What policies will be in place to allow data liquidity yet protect patient privacy? And to quote Diana Forsythe (yes, again!):
Whose assumptions and whose point of view are inscribed in the design of this tool?
I have to take exception with one sentence in your great post.
You wrote “Their debates go to the heart of participatory medicine: whose data is it?”
Participatory Medicine is not about data. It is about a deep transformation of the hierarchical rules in the medical system. Data is just one of the elements necessary to assist in this transformation. It helps to make truly informed decisions about health, including wellness and sickness. But data not associated with the ability to share life experiences and many other types of information will remain just that, pure data. On it’s own it is not useful to balance what evidence-based medicine dictates with what is possible and desirable for the individual patient (the end result of participatory medicine).
Agreed, Gilles – data is one channel, one dimension, one enabling aspect, but not at the core of PM.
I do think Danny Sands is right when he asks “How can patients participate if they can’t see their data?” But even that doesn’t inherently hang on ownership of the data.
Thanks, Gilles, I appreciate the clarification. Data isn’t the “heart” of participatory medicine, but it’s part of the solution.