The Patient as the Platform

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.

______________________

Doc Searls is Senior Editor of Linux Journal

Comments

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Start at the beginning

Lisa Stockwell's picture

Good post providing lots of good food for thought.

I know the pressing issue is how to deal with 78 million plus boomers (plus our parents) who will impact the healthcare system en masse without their health histories intact.

But rather than wait to figure out how to deal with the entire population, what if we were to start a patient as platform program now for newborns (as well as children and young adults with only vaccinations and the occasional ear infection to include on their PHRs)? At the very least there would be a system in place for when they need it most, a few generations from now? The data would have to be stored in a way that it can be transferred easily as technology changes. But at least this is something that is actionable now.

Patient as Platform

hal9007's picture

I like the notion of "patient as the platform." It seems to me that platform provides for the coming together of data and systems (plural.) Platform also allows for evolution whereas system requires completeness -- an incomplete system doesn't work.

It is time we revisited some of the early thinking about the Internet. I did that with regard to In Praise of Evolvable Systems by Clay Shirky in a post day-before yesterday: Cathedral & Bazaar Revisited: Healthcare Information http://wp.me/pyfFd-6P ePatien Dave did that with you article.

You guys were pretty damn smart!

I'm In!

Andrew Walker's picture

Background:
I am currently very busy. I'm a motion control engineer, my wife is in medical school, and we have two daughters(one in Kindergarten and one in Pre-School). Given that my wife is in medical school, in the not too distant future, we may not depend on my salary and I might be able to volunteer my time for a worthy cause.

With Regards to the Article:
If enough people get behind an open source/standards based project modelled after the "Patient as the Platform", I'm in! Anyone with me?

With the new administration, it seems like there is a large focus to fix some of the current problems in health care records/administration/etc... However, there seems to be an urgency that is likely to leave us with another fractured, incompatible, and closed set of systems. Is this something that is going to have to wait until the next major crisis? Or is there a chance we can pitch this idea and be given the chance to prove that it can improve both the quality and cost of our health care system?

Standards and Open Source Are Not Enough

Jonathan Tregear's picture

In this case, I don't think that standards based health information storage and exchange with or without open source systems will be sufficient to overcome the problem. This is a case where fighting fire with fire is probably the only way to get to a better solution than the status quo. That is, I think it will take entities of sufficient power and resources (i.e Microsoft and Google) and most importantly a direct relationship with health care services consumers (via other relationships with those same comsumers) to introduce a health information storage and exchange format that is non-health information system vendor specific.

It will never be in the commercial interest of health information system vendors to adopt standardized formats for storage and exchange. Hence, all of the ISO and other standards work in this area have gone and will go nowhere. While Microsoft/Google solutions will be in some sense still proprietary, they have the power to drag the commercial vendors along if they are successful. No doubt kicking and screaming for sure.

What if you cannot convince decision makers?

Bart Collet's picture

As an advocate for opensource in healthcare i published a small article on that matter:
http://www.zorgbeheer.be/index.php?option=com_content&view=article&id=66...
Most difficult (and most underestimated) issue i encountered was convincing decision makers about opensource.
Some ceo's look at you as if you come from Mars when you tell them about opensource, moreover, they would go for whatever product, as long as it's NOT opensource. This is solely caused by ict-illiteracy and ancient business-models.
Best example was at a conference (febr. 2007) where a sales rep argued that PHP was for "script kiddies" and couldn't be used in healthcare. Countering that foolish statement i gave examples from PHP-use in NASA, Lufthansa, Credit Agricole, ... Alas, ALL the decision makers in the room believed what that sales rep said ... because he came from a respected, worldwide well-known software producer.

Finding "enough"

Doc Searls's picture

I agree that it is essential for Big Boys to get involved. Google and Microsoft already are, with Google Health and HealthVault. But I don't agree that "It will never be in the commercial interest of health information system vendors to adopt standardized formats for storage and exchange". It wasn't in any big information systems vendor's interest to adopt the Internet and its standards, and they all did. Of course, they had to, because the Net, the Web, email and the rest of it became a necessity, whether they liked it or not. And today they wouldn't go back. Maybe that's your point too. "Kicking and screaming," indeed.

Every large back-end service has proprietary qualities. This is even true of Linux-based stuff like Amazon's S3 and EC2. What's important from the user's perspective is that the data belongs to them, and not to the system. And that the data is portable. If I want to move my data from HealthVault to Google Health, I should be able to do that, at my own volition.

Doc Searls is Senior Editor of Linux Journal

FLYFF: Tears spread FLYFF

Flyff penya's picture

The confusion of life, the life of confusion, let me into this world of FLYFF.
And her acquaintance, accompanied, in love, let me feel the slightest warmth there. When I lose world, she chats with me, lonely time she for me to disperse my lonely. In a vast human sea of the game world, we love each other. Mutual trust, mutual dependence and mutual consolation, many……
Who is she? She is floating, when I step such as the life of the gaps, she held my hand and took me out of my confusion, when I lost the color of life, she was warm to my life again with the sun, we cherish each other with every, every second. In the game, I do not what I can send her, so I send her a lot of Flyff penya, in this way; she can buy things of her love.
But when I immersed in the joy of love, the divorced parents is like a lightning bolt, the unconscious world of hit me, I do not know how to face, after my mother went to the United States, leaving me and my father. Tears from the eyes again and again in the shed, I have repeatedly said to myself: strong, while tears. However, whenever I see pictures of the family, I just feel sad.
I had to go, I want to with my mother to abroad, when I have to leave when I found that everything is so close to a beautiful, every slightest sunshine are so warm. And FLYFF friends are so warm, so easygoing. I was usually in FLYFF in the quarrel and guilt, in FLYFF in the feelings and tears. I thank my friends, when I need equipment; you give me a lot of Flyff money.
I am very concerned floating; I do not know if we can together, I do not know if we can not have the right to love. All of everything likes Passing Clouds, beautiful moment, but after a time, leaving behind only memories, only the left sad.
Perhaps after a long time, everyone will forget my existence. Perhaps after a long time, friends are separate lies, and I just shoot everyone in the lives of a meteor, in the twinkling of an eye, disappeared in people's memory.
The tears have wet my hands; I can no longer describe the current mood. Two months, in FLYFF in the understanding of a lot of friends and now I can only in the distant places, bless you: have fun every day, with a beautiful love.

Two Problems

LabThug's picture

I'm the Informatics Manager for a research support center within an academic healthcare institution in the Southeastern United States. IMO, PHRs are a novelty which will be shortlived. This is because they trust that the patients:

1) will document everything relevant

and

2) understand enough about his/her own healthcare to get it right

Storing data is one facet of Healthcare Informatics. Honestly, if it's done right, there won't be a problem as to where the data is stored. However, the "if it's done right" is the key. You're main complaint seems to be that there isn't an effective way to collect all the information on a patient. While this is true, collecting information is only a small piece of the puzzle. It's collecting the information in a *sensicle and meaningful way* that truly matters. If you can't do that, it doesn't matter where the information is housed.

Right now, there are ways to pool information from different datasources together (HL7 being the most prominant). However, little is being done to ensure that DataSource1.Table1.Column1 is really the same thing as DataSource2.Table3.Column25. In addition, there is vast amounts of research needed to convert:

"This patient has Condition1, Condition2, Condition3. In addition he/she is allergic to Drug1, Food 1. However, they have no history of Problem1."

into a representation that can quickly be retrieved from the storage mechanism.

While PHRs do allow for patients to conglomerate their data, I am worried what they will be conglomerating. If all their going to be doing is sweeping all the crap from many different places into one location...well, I think you can guess what they'll end up with.

A need for open standards

WorkingWriter's picture

I've been working on a manual for a product that allows big expensive diagnostic machines to communicate directly with dedicated medical records servers. We wanted to deliver results in either PDF or based on the ISO HL7 standard. I learned that there are 50+ vendors of these records servers, and many of them answered the corporate equivalent of "huh?" when asked if that would work on their machines.

There is hope in that this company is rather large, and may be able to boost usage of the standard, but nothing is guaranteed of course. At least there is a standard to look to.

Healthcare Information

Tom Guarriello's picture

For the first twenty years of my career, I worked in the health care field, as a clinical psychologist in a public mental health center and in private practice. In the late 70s/early 80s, I was involved in acquiring, installing and running what were then called management information systems in health care facilities, primarily in hospitals. After a decade of working in that world, I fled, screaming, in an attempt to save what was left of my sanity. The process by which hospitals and other facilities choose and implement information systems was fraught with politics, favoritism and outright corruption. Granted, those were the early days of automated medical records but personal experience (my own and Doc's) tells me that the ground on which these decisions are made are no more patient-centric today than they were then. Health care service providers, especially those on the front line of patient care - attending physicians, nurses, aides, therapists - are so overwhelmed by the patient load that the prospect of participating in the design, selection and implementation of new systems reduces them to tears. These are people who have been jerked around so often by system vendors, many selling rare oils derived from reptiles, that they are loath to consider another time around the wheel. A patient-centric health care information system is an absolute necessity in America. My experience leads me to be very pessimistic about its prospects.

Grounds for optimism/pessimism

Doc Searls's picture

Thanks, Tom.

I must confess that grounds for pessimism are abundant and daunting — so daunting, in fact, that until this last week I took guarded solace in knowing that I was at least in the care of one of the nation's best health care systems.

Ah well.

So I'll grant that the task is sisyphean in the extreme. But I am also sure that in the long run the only workable solutions will come from the bottom up in health care, just as they are coming the same direction in so many other fields. I'd like to help with that before I die — or before the system kills me, whichever comes first.

Doc Searls is Senior Editor of Linux Journal

e-patients

Jon Lebkowsky's picture

Doc, just a pointer to an aggregate source: check out http://e-patients.net for the e-Patients white paper and blog. This is a manifestation of the late Tom Ferguson's work over the years, which was all about empowering patients - until his death, he was engaged in the effort you describe, and he pulled together a working group that has carried on, mostly through the blog. There'll be a journal soon.

I'm on the way to post there about your experience.

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