When I was running Google Health I would constantly hear how it was impossible to download health data because of the doctors notes and conditions and lots of fancy stuff that wouldn’t be interoperable. And I agreed. I focused entirely on getting labs and meds to be generally available because these seemed to be the only two things that were computable and not dependent on the vagueries of the hospitals and EHR’s. There is a wonderful post up on on ePatients.net by e-Patient Dave detailing what happens when you try to get more and actually get less. The post is a constant reminder to start small and make sure that what you’re doing works. It is also a reminder that the big systems because they aren’t paid for by the consumers or reviewed by the consumers or ever see the light of day are a terrible mess. Like everything else hidden in the dark, health data is crawling with mistakes. Let’s let the light in!!
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Adam Bosworth's Weblog 
Thanks for the kind words, Adam.
I think in the coming weeks it’ll be useful for us to give the public a tutorial on the fundamentals of what makes reliable data (and what makes data reliable). I know enough to detect when something stinks, and I know how to not create stinkers, but I don’t know how to teach the fundamentals.
I know you guys are hyper-busy but if you send paint, I’ll wield the brush.
p.s. I’ve begun my next steps, probing into other areas of the interface, and it gets curiouser. Not sure what I have to say about that yet, but there will be something, because it’s clear that things are working even less clearly than I thought.
The incredible mess that Dave discovered while trying to move data from the EHR to the PHR just demonstrate the fallacy of what we have been told for years regarding the benefits of the EHR.
Dave in fact did not move data from an EHR to a PHR but from a ERR (Electronic Reimbursement Record) to a PHR. There is no valid health data in what he surfaced, just reimbursement data. Investigative journalists should really pursue this avenue and find how much of the existing so -called EHR in major hospitals are in fact mostly ERRs. My guess is that the majority of them are, since we constantly hear about the need for doctors and hospitals to be reimbursed for everything they do. If my hunch is correct, Adam’s past posts about alternative ways to build cheap and accurate EHR should become prescient.
Well, one thing that really surprises me is that the data I *can* read in PatientSite did NOT get sent over.
The issue here, quite frankly, is the need for a filter, human or mechanical. I’ve commented on Dave’s wonderful blog piece that his description conjured up an image of shaking around the typical 4 inch thick hospital chart, and watching all the useless and irrelevant data spill out onto the floor, along with the useful and relevant bits and pieces. No hospital systems (that I know of) have been designed to help patients (or doctors, for that matter) create organized sets of relevant information from the reams of data generated during a hospital stay, or a series of visits.
So, Adam’s words of wisdom are spot on: start with something simple, such as a filter that starts small — say with medications, diagnoses, and lab results. If consumers/patients demand that much, it will be possible to — perhaps — to make progres… DCK
I appreciate the effort you put into your site. Keep at it!
Your site is wonderful! Let me blow you away with this cancer information! Remember 40% of Americans get cancer!
I am a Family Physician / General Practitioner working in a variety of medical fields.
The closing of the collaboration gap is crucial. Primary care providers and patients working together is the crucial component.
A good, integrated health portal is a vital key in achieving this.
My impression is that this has not been created, yet.
A good family physician acts as a link between the specialized medical “expert” world and the patients’ individualized world creating a common space for practical solutions in the middle.
Both aspects need to be present to work.
This is what needs to be created, and I would love to participate in its creation.
I’m surprised you don’t include radiological image data (X-Ray, CT, MR, ultrasound, and PET) in the things that you intend to manage on behalf of the patient. These are available through standardized formats and communications protocols (DICOM). Unlike patient records and doctors notes, image data actually belongs to the patient, and they can take it with them in the form of films and digital media.