The WELL: inkwell.vue.391: Dave deBronkart, Laugh, Sing, and Eat Like a Pig

#94: Gail (gail) Mon 20 Sep 10 17:33

Mon, 20 Sep 2010 17:33:00 PDT

Incredible story! Bravo for your work for everybody, building our mutual Access to Tools, Dave. And thanks for visiting!

If you're interested, check out the Health <health> discussions, too. You may enjoy how long people here have been organizing to learn and challenge health information. Some of the older discussions in Health go back to the 1980s, and the ongoing discussion is quite solid today. [Read entire topic]

#93: Jon Lebkowsky (jonl) Thu 16 Sep 10 10:16

Thu, 16 Sep 2010 10:16:00 PDT

Hence "the healthcare mess." [Read entire topic]

#92: paralyzed by a question like that (debunix) Wed 15 Sep 10 23:22

Wed, 15 Sep 2010 23:22:00 PDT

>there was this problem of all the paper records: how to get THEM into the systems?? And the talk in DC was, "We'll just grab the insurance codes. That'll be good enough."

That is fucking insane.

Billing codes are little tiny boxes into which we try to squeeze you and are no where near detailed enough to represent your clinical condition. No way could I begin to do justice to my patients if they burnt my paper records tomorrow and left me only the billing codes. And I take care of kids, with much shorter and generally less complex medical histories than adults. Yikes. [Read entire topic]

#91: . (wickett) Wed 15 Sep 10 19:47

Wed, 15 Sep 2010 19:47:00 PDT

Thank you ever so much for capsizing the boat! You did every single person in this country an immeasurable good! [Read entire topic]

#90: Ted Newcomb (tcn) Wed 15 Sep 10 18:29

Wed, 15 Sep 2010 18:29:00 PDT

Thanks for all your great work. [Read entire topic]

#89: Jon Lebkowsky (jonl) Wed 15 Sep 10 17:38

Wed, 15 Sep 2010 17:38:00 PDT

That's a great note to end this discussion. Dave, many thanks for committing so much of your time and insightful prose here, and thanks to all the others who joined the conversation, especially Julie and Elizabeth, for their frank accounts of interactions with the healthcare system.

Please check out http://e-patients.net and http://jopm.org for more information about the evolution of participatory medicine. [Read entire topic]

#88: e-Patient Dave (epatientdave) Wed 15 Sep 10 12:02

Wed, 15 Sep 2010 12:02:00 PDT

Re #82, what's happened since my April 2009 post about my health data http://e-patients.net/archives/2010/05/%E2%80%9Cgimme-my-damn-data%E2%80%9D-the-stage-is-being-set-to-enable-patient-driven-disruptive-innovation.html ... it's described in the epilog to the book, titled "A blogger, 'just a patient,' bends national policy."

Little did I realize that this post would land smack in the middle of a discussion in DC about the adoption of electronic medical record systems (EMRs). By that time the federal stimulus bill had been passed, with ~$20B of incentives to docs to use EMR and another $20B of related spending, e.g. training on how to change their business office to operate electronically.

Most physicians have only automated billing, because that's how they get paid, especially the insurance billing codes. So when they thought about going electronic for patient records, there was this problem of all the paper records: how to get THEM into the systems?? And the talk in DC was, "We'll just grab the insurance codes. That'll be good enough."

Unrelated to that (!), my hospital had announced an interface to let you move your medical records into Google Health. I tried it, because I like to do mashups. Well, turns out the hospital actually didn't have code to move my real medical records - all they did was send my insurance records, just as was being discussed in DC.

There are many reasons why the result was a data disaster. For one thing, they didn't send the dates, so everything I'd ever had came across as being a current condition. This triggered incorrect warnings about things that weren't current. Plus, insurance billing codes are much coarser than clinical reality. And then there's the business reality that sometimes people will put in a bogus code to get the system to accept something the patient needs, like a glucose test.

Long story short, using insurance records as a proxy for your actual body's condition and history is just a wicked bad idea. I didn't know about the DC politics but being something of a data geek, I wrote this 3500 word post.

The Boston Globe called and said it was important and they wanted to publish it. Little did I know they'd put it on page 1 (4/13/09), which caused major sh!t to hit the fan. A week later there was a convention in Boston, and by that time it had become the buzz of the industry. There were people from DC and from national media there, and we were off and running.

I'm told that the whole idea of using insurance data was instantly killed. How bizarre is that?

Then I got invited to policy meetings about EMrs, I'm told that my testimony here http://e-patients.net/archives/2010/04/testimony-submitted-to-the-meaningful-use-workgroup-for-its-april-20-meeting.html and here http://e-patients.net/archives/2010/02/testimony-submitted-to-the-adoptioncertification-workgroup-for-its-feb-25-meeting.html was a key factor in the final regulations, which say that in order to get the federal stimulus $, the doctor has to demonstrate that his/her patients & families are actively engaged with their recors.

Pretty freaky. But see, this is kind of the whole point. Going all the way back to the Whole Earth Catalog, Access To Tools: every bit of this story was transformed or enabled by the fact that little ol' me had access to tools that didn't exist a generation ago.

The world has changed. Patients and citizens have far more access and power than ever before. And that's cool. [Read entire topic]

#87: e-Patient Dave (epatientdave) Wed 15 Sep 10 11:05

Wed, 15 Sep 2010 11:05:00 PDT

Re that mobile post (which is excellent, as SFox usually is) - be sure to see the comments. There's significant discussion of whether the "done deal" revolution (which I agree with) is actually reaching the disadvantaged.

Hey y'all, it's been good to be here. I'll check back tonight for any last-hour post-flinging.:) [Read entire topic]

#86: Jon Lebkowsky (jonl) Tue 14 Sep 10 10:02

Tue, 14 Sep 2010 10:02:00 PDT

That's great to hear, Dave!

I also want to point to Susannah Fox's great post on mobile computing at e-Patients.net, called "The Power of Mobile." It's at http://e-patients.net/archives/2010/09/the-power-of-mobile.html We should talk about that post, especially this: "I am ready to declare the access revolution over, at least in the United States. It*s time to change our frame of reference. Instead of talking about a revolution, our data shows that it is time to start building a new civilization."

The official end of this conversation is tomorrow, though as always, we can extend the conversation as long as we want.

Anyone reading this who's not a member of the WELL but wants to get a word in edgewise, send your comments and questions via email to inkwell at well.com, and we'll get it posted. [Read entire topic]

#85: . (wickett) Tue 14 Sep 10 09:54

Tue, 14 Sep 2010 09:54:00 PDT

Good going! [Read entire topic]