THCB & Health 2.0 are happy to be a small part of a very important declaration, made today by a mix of patients, physicians, technologists and concerned citizens. It’s a Declaration of Health Data Rights, and it’s extremely important because access to usable data is a very pressing problem in the health care system, and one that we have the opportunity to solve if we bake the concept into regulation and practice now, as electronic health data becomes more pervasive. Here’s the declaration:
In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
- Have the right to our own health data
- Have the right to know the source of each health data element
- Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
- Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.
More information about how you can support this declaration, how it was created, a FAQ and what you can do to get involved is all at www.healthdatarights.org
Now he’s no longer a young punk but an insider of the first order Ezra Klein has come up trumps and got an early copy of the latest Senate Finance committee legislation/trial balloon. It’s not going to make the left happy. In order to ratchet down from the $1.3 billion CBO said that their earlier version was going to cost, the Committee has basically taken out the public plan option, cut back the amount of subsidies, and are relying on what looks like an increasingly unenforceable individual mandate.
Now admittedly this is where I said Obama would end up more than 18 months ago. But, given that with the recession we really had a chance to do something here, this is very very weak.
I got a call from Organizing for America (Obama’s grass roots organization) asking me to support the reform bill the other day. This one is barely worth passing. We might be better off leaving the system and having a proper collapse before we start again in the next recession (which at the rate we’re going might be this one).
It’s looking increasingly like the Democrats on the Committee got rolled, and didn’t even care about that. Perhaps they felt that the risk of passage of something significant was greater than the risk of a quick loss of legislation that no one could get behind anyway.
I’m not allowed to call the Democrats a certain word beginning with P any more (even if John Stewart uses it all the time). But I can call them pusillanimous. And in your treat for the evening, here’s Marina from HotForWords to explain what that means.
My final interview from my trip to Microsoft was with Nate McLemore, who is Director of Business Development for the Health Solutions Group and also involved in Microsoft’s policy & lobbying work. Nate talked about Microsoft’s role in the ongoing deliberations on meaningful use, ARRA and all that.
The first draft of “meaningful use” came out early yesterday, and I was struck by two things. First, probably influenced by the NCVHS recommendations and the Consumer Partnership for e-Health (See Update), the work-group included a lot of consumer-facing aspects in the concept of meaningful use. Here’s the full draft. Comments are being accepted now (but hurry as they’re going to come back with version two in a month, you have 9 days!).
But in terms of getting consumer activities into the 2011 definition the “Objectives” suggest that meaningful use includes:
- Providing patients with electronic copy of or electronic access to clinical information (labs, medication list, allergies, medical “problem” list)
- Providing access to patient specific educational sources
- Providing clinical summaries for patients at each encounterContinue reading…
Just a few years ago The New York Times was on its last legs, printing Judy Miller’s re-mouthing of Cheney’s lies, holding back the wiretapping story until after the 2004 election, and generally spouting a lot of rubbish about health care.
Somehow the leadership there looked to THCB for inspiration.
ePatientDave and Giles Frydman have been working on the Society of Participatory Medicine for a while and Alan Greene MD will be the first President. Now there’s a editorial board for the Journal of Participatory Medicine. The editors will be Charles W. Smith (who announced it at the end of last month at his blog eDocAmerica), and Jessie Gruman, patient extraordinaire from the Center for Advancing Health. There’s also an advisory board including Kevin Kelly, Adam Bosworth, Esther Dyson, David Kibbe, Howard Rheingold, Eric von Hippel, & Peter Yellowlees—which is a good mix of Ubbergeeks and geeky doctors.
To me there’s a slight difference between Health 2.0 which in my definition is more about using tools and technology to change the health care system, and participatory medicine which is centered around the e-Patients blog. But that hasn’t stopped other definitionistas (yes, I mean you Ted!) from crunching them together—and of course any tension between them is significantly less than the common purpose of changing health care using the best tools available.Continue reading…
Continuing my series of interviews from my trip to Microsoft the week before last (before their conference) I met with Michael Raymer. Mike is a long time health IT veteran who’s been at Microsoft for about six months and is in charge of the Amalga product line. Amalga includes a standard HIT clinical product aimed mostly at the Asian market, and an enterprise integration product aimed at large hospital organizations in the US. What that means exactly, and how Amalga fits into the EMR ecosystem, Mike explains in this interview…
Technical note: If you’re having trouble with this video in IE, you may need to download the latest FlashPlayer version. Unfortunately our video service Vimeo is having some problems that appear to need the latest version of
FlashPlayer. You can do that here. Alternatively Firefox seems to work fin (but don’t let the folks at Microsoft know that I told you that!)
I had David Gratzer on THCB a while back. He was so nice, that it was really hard for me to get mad with him—even though his book was basically a pack of lies. He seriously suggested that the UK under Blair was NHS was going to covert into an American-type system, and he couldn’t answer why he allowed his wife to come here and be uninsured! (Of course my father the gynecologist always told me that all psychiatrists are nuts anyway)
Then last week the single payer crowd finally got to appear before a Congressional committee, and for some bizarre reason Gratzer was there too (I guess he provided balance). And the very nice David Gratzer finds that Dennis Kucinich is not quite so nice. Watch this…
Over at Dr Val’s Get Better Health site Evan Falchuk from Best Doctors is very grumpy about Steve Pearlstein’s column in the WaPo. Pearlstein rewrites Gawande’s rewrite of Shannon Brownlee’s Overtreated. Not much surprise here—everyone is doing it and despite my cynicism Gawande’s piece in The New Yorker has hit a nerve, not least because Obama told everyone to read it—showing that he’s way more influential than Orszag in the White House despite what we wonks all think. Orszag by the way has been hammering on about the Dartmouth stuff for years and even dragged me into his office at CBO back in 2007 to suggest THCB kept plugging away about practice variation. But obviously no one in the White House was heeding his back reading of THCB, until the boss came and told them all to read Gawande.
I don't delve into the world of hospitals, physicians and health care operations as much as I should. So when I was asked to interview Adam Singer, the CEO of IPC The Hospitalist Company, the biggest company (and a publicly traded one at that) managing a group of hospitalists–the internists who run patient care in more and more big and small facilities, I thought I should!
What I didn't realize is that not only does Adam know lots about the present and future of hospitalists and how that role has emerged in recent years, he also has some pretty strong views on the relationship between hospitals and doctors (keep 'em separate), bundling (no, thanks) and also the supply of physicians (let in more international docs or we're in a big hole). So it's a wide ranging discussion and one I think you'll enjoy. Here it is.