The Patient as the Platform

by Doc Searls

Health is personal. Health Care is not. The term is a euphemism for Condition Treatment, and it's not about patients. It's about systems, and most of those are both proprietary and closed.

I believe the closed and proprietary nature of heath care is itself a disease that needs to be cured. That belief came to me during the past week, which I spent in the hospital recovering from an attack of pancreatitis.

The condition was brought on by a procedure called ERCP (Endoscopic Retrograde Cholangiopancreatography), in which I was knocked unconscious while a tiny probe, inserted through my gullet, sought to find whether a cyst that showed up on an MRI was communicating with my pancreatic duct. The probe injected a dye into the duct, examined the duct from the inside, washed it back out and retreated. Nothing was found.

There is a 1-in-20 chance that this procedure can cause pancreatitis. That's what the gastroenterologist told me, and what it said on the consent form I signed before they put me under.

Yet for me the chance of getting pancreatitis was 1-in-1. Could we have known that? I believe we could have made a more educated guess than the 1-in-20 template alone provided. The fault there is partly mine, because I knew (and cared) more about myself than the medical system did, and there were possible risk factors which, in retrospect, I should have flagged. But I trusted the system. Thus I found what I should have known first: that the system is built to treat templates, not the pile of combined oddities and typicalities that comprise a sixty-year-old human being.

It also turned out that the procedure was unnecessary. When a second team of doctors looked at the MRI, they said it was clear to them that the cyst wasn't involved with the duct. But that information came too late. I blame myself for that too, because I was in a rush to get the procedure out of the way before a month of long-planned travel. (All of which had to be scuttled, at no small cost.)

Then there was the MRI itself. When we first brought the CD from the MRI facility to our gastroenterologist, it failed to load on her Windows workstation. That was the first delay. Later at home I tried to view the CD but only found a pile of Windows binaries. I only run Linux and Mac machines here. 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. (It is significant to me that my own mother died when an ERCP accident was followed by poor communication among specialists on her case.) 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.

I have a position to take here, and it's on the same side as both Google Health and Microsoft's HealthVault — but without subordinate dependencies on either. That side is my own. That's because I believe the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems.

We've been talking about this for some time in , which is growing to become a collection of overlapping and converging development efforts, all aimed at equipping individuals with tools of both independence and engagement with vendors and other providers — including health care providers.

More than a year ago, Joe Andrieu put the challenge and the solution rather well in a post titled VRM: The User as Point of Integration. Making the user the point of integration, he said, "has the potential to be profoundly different and profoundly more efficient than current practices".

Applied in the marketplace, it works like this:

Instead of thinking of humans as the active element, 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.

Referring to my first encounter last summer with Harvard's health care system (the one in which I still operate), Joe adds,

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.

Yes, what if?

I think systems like Google Health and HealthVault — at least in concept — are steps in the right direction. But we won't have true independence, we won't have control of our own health care, if we still remain dependents of one large company or another.

The Personal Health Record, or PHR, has been a subject of both debate and development for some time. That last link goes to the Wikipedia entry on the topic, which is all over a non-existent map. (Complete with strike-outs in the current draft.) MyPHR is site that offers guidance to PHRs and is run by the American Health Information Management Association (AHIMA).

I could point many more places, but I'd rather just start with Fred Trotter and let him take it from there. Fred is a free and open source software veteran and a vigorous advocate of GPL'd software in medicine. He also says wise things about the difficulties we're facing here. For example,

Lets imagine that I had some kind of life event that would require me to gather those records together. To do that, I would need to call every doctor I have ever visited, and request a copy of my records. Healthcare providers under HIPAA are mandated to give me this information, and many of them, as a professional courtesy, would waive the costs of transferring my record to me. All of the providers I might contact would prefer to fax me my records. Faxing is simple, easy and well-understood by the medical practices. Faxing over phone lines, is the "health exchange network" that we have in the United States. (Unless you are lucky enough to be a Veteran, and have a record in VistA)

...Why does that suck? Because the resulting documents are largely valueless.

After making all of the requests and getting all of the faxes. I would have a briefcase full of documents of my healthcare. 95% of it would be redundant, showing my slowly rising cholesterol and blood pressure scores. The 5% that was really critical, like my imaginary allergy would be buried so deep in my briefcase of papers that it would never be seen.

Given current primary care reimbursements, my doctor is incented do everything in his power to spend under 10 minutes talking to me. If he actually had to read through my briefcase of papers, then he would spend an hour doing nothing but shuffling papers. It is a much better use of his time just to ask "are you allergic to anything?". I would of course say "not that I know of" in response. (...For all I know, I really am allergic to anticonvulsants)

About which he concludes,

...our ability to generate medical information has vastly outpaced our methods for handling that information.

That sentence should explain why we need storehouses of health data, that we can use to effectively deal with our own health information.

I believe that having a data store for health records is a necessary but insufficient condition for the true independence and control required for each of us to be the point of integration for the health care we get, and the point of origination for controlling that care — for getting second and third opinions, for summoning data across bureaucratic boundaries, for actually relating to the systems that serve us, rather than serving as dependent variables within them.

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.

We cannot fix health care only at the institutional level. No company and no government agency can fix health care, any more than any company or government could fix networking or computing. Those had to be fixed by hackers building solutions for everybody and not just themselves. (Even if they were just "scratching their own itch".) Today the Internet, Linux, and countless free and open source code bases are core infrastructural systems on which civilization itself relies. The amount of business this vast and growing infrastructure supports so far exceeds the amount it undermines and obsoletes that it's silly to even bother doing the math — if it could be done in any case. One might as well argue against the Big Bang.

I would like in my lifetime to look back on the inclusion of health care among the institutions reformed utterly from the bottom up by free and open source infrastructure — and countless new businesses and services grown atop patients as platforms.

There is much that is already being done, and I know I am being unfair to many of those by confining my sources in this piece to Google Fred and too few others. So I'm trusting the rest of you to help fill us in.

And I'm hoping that some of the folks already working this field can come to the first VRM Workshop at Harvard on July 14-15. Be nice to see you there.