Note added afterward by e-Patient Dave:
Everyone, please read this post well and understand it well. I think this is a signal moment in our history. As much as I’ve believed in the principles developed by Doc Tom and his e-Patient Scholars Working Group, this issue takes it to a level I’d never imagined. I never knew Doc Tom; thanks to Jon Lebkowsky for tying this together so well.

Open Source advocate Doc Searls of Linux Journal has posted a classic e-patient story, noting the closed and proprietary nature of the healthcare system, calling it “a disease that has to be cured.” Doc was mobilized by his own experience with a procedure called an ERCP (Endoscopic Retrograde Cholangiopancreatography), which had a “1 in 20 chance” of causing pancreatitis. Doc proved to be a one in twenty, and after battling pancreatitis learned that the MRI that led to the ERCP was misinterpreted, the procedure was unnecessary, that he had stumbled into a system that is “built to treat templates, not the pile of combined oddities and typicalities that comprise a sixty-year-old human being.”

He notes that the MRI image files were stored on a CD that his gastroenterologist couldn’t open and that he himself couldn’t read, because they were stored as Windows binaries, and Doc has only Mac and Linux PCs. He asks “Why weren’t the image files in an open format that any machine can view?”

The answer came from one of the many doctors that came by my room in the course of my eight days in the hospital. He said that the health care system is collection of closed alliances between large providers of equipment, software systems and institutional customers. These alliances are closed and proprietary by nature and policy, and account for much of the friction built into the overall health care system — not to mention injuries and deaths due to poor communicating and data sharing among systems and practitioners….He also gave big kudos to Google for “sticking it to the whole industry” with Google Health, a service built to provide individuals with a way to compile and control use of their health-related data.

Doc goes on to say he believes “the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems.” What does he mean by “platform”? Doc mention’s Joe Andrieu’s post about VRM (vendor relationship management) describing the user as the point of integration: “When we put the user at the center, and make them the point of integration, the entire system becomes simpler, more robust, more scalable, and more useful.” Point of integration is what Doc means by platform.

Consider this restatement:

When we put the patient at the center, and make them the point of integration, the entire system becomes simpler, more robust, more scalable, and more useful.

This is close to the philosophy of the e-Patients Group. Founder Tom Ferguson described e-patients as “individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.” They’re not passive consumers, but equal partners with providers and institutions.

As a longtime advocate of open technology, Doc clearly understood that this kind of participation requires open access to information. When health information and systems are considered proprietary and closed, healthcare systems are constrained and inefficient; crucial information is limited to a few limited channels. The Health Commons project suggests how closed, proprietary systems occlude research and constrain the quick and efficient development of new therapies. Doc quotes Joe Andrieu’s suggestion that we think “of humans as the environment and vendors as the ants.”

Instead of humans visiting a bunch of isolated data silos, invert it so that vendors are visiting stationary users–or their stationary data stores.

Now, instead of a bunch of individuals running around leaving a disparate data trail which is hard to keep track of, the individual represents the digital environment where data is stored by vendors. When the next vendor comes along, the data is there, available for use, without the need for complex integration, processing, or systems maintenance, just like the environment is there for the next ant to come along, allowing that ant to do what they do without a complicated brain or sophisticated map of the territory.

Andrieu applies this thinking to the healthcare system:

What if instead of individual, isolated IT departments and infrastructure, Doc, the user was the integrating agent in the system? That would not only assure that Doc had control over the propagation of his medical history, it would assure all of the service providers in the loop that, in fact, they had access to all of Doc’s medical history. All of his medications. All of his allergies. All of his past surgeries or treatments. His (potentially apocryphal) visits to new age homeopathic healers. His chiropractic treatments. His crazy new diet. All of these things could affect the judgment of the medical professionals charged with his care. And yet, trying to integrate all of those systems from the top down is not only a nightmare, it is a nightmare that apparently continues to fail despite massive federal efforts to re-invent medical care.

Doc goes on to quote Fred Trotter on the vast and growing body of healthcare records for any individual, how crucial data can be buried in the stacks, how “our ability to generate medical information has vastly outpaced our methods for handling that information.”

To have true independence and control, we need access to all of that data, and as doc says, we need to be the “point of integration for the health care we get, and the point of origination for controlling that care.”

For patients to become platforms, we need more tools and capabilities that are native to the patient. All of us need to be able to walk around the world with the ability to jack into any health care system and drive it. How? I don’t know yet. I’m still new to this. But I do know that these are capabilities we need to add to ourselves, as independent drivers of health care services. And that these must be based on free and open standards and code.

The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.

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