Getting real about fixing health care

I’m listening right now to On Point*, where the topic is Pushing E-Health Records. The only case against electronic health records (EHR, aka electronic medical recordsk, or EMR) is risk of compromised privacy. Exposure goes up. The friction involved in grabbing electronic medical records is lower than that involved in grabbing paper ones, especially with the Internet connecting damn near everything.

Here’s the problem with privacy in the Internet Age (which we are now in, with no hope of ever getting out, unless we live the connectionless life): the Net is a big copy machine. It’s amazing how a fact so simple escapes attention until a first-rate metaphorist such as Kevin Kelly comes along to expound on what ought to be obvious:

The internet is a copy machine. At its most foundational level, it copies every action, every character, every thought we make while we ride upon it. In order to send a message from one corner of the internet to another, the protocols of communication demand that the whole message be copied along the way several times. IT companies make a lot of money selling equipment that facilitates this ceaseless copying. Every bit of data ever produced on any computer is copied somewhere. The digital economy is thus run on a river of copies. Unlike the mass-produced reproductions of the machine age, these copies are not just cheap, they are free.

Our digital communication network has been engineered so that copies flow with as little friction as possible. Indeed, copies flow so freely we could think of the internet as a super-distribution system, where once a copy is introduced it will continue to flow through the network forever, much like electricity in a superconductive wire. We see evidence of this in real life. Once anything that can be copied is brought into contact with internet, it will be copied, and those copies never leave. Even a dog knows you can’t erase something once it’s flowed on the internet.

We’re not going to fix that. The copying nature of the Net is a feature, not a bug. We can fight some of it with crypto between trusting parties. But until we find ways to make that easy, the exposure is there. And, as long as it is, we’re going to have people who say risk of exposure overrides other concerns, such as the fact that dozens of thousands of people in the U.S. alone die every year of bad health care record keeping and communications — in other words, of bad data.

Still, if we want good medical care, we need EHR. That much is plain. The question is, How?

The answer will not be an information silo, or a set of silos. We have too many of those already. That’s the problem we have now — both on paper and in electronic formats (as I discovered last year in one of my own medical adventures).

The patient needs to be the point of integration for his or her own data, and the point of origination about what gets done with it. Even if the patient’s primary care physician serves as a trusted originator of medical decisions, the patient needs to anchor the vector of his or her own care, for the simple reason that the patient is the one constant as he or she moves through various medical specialties and systems.

The patient needs to be the platform. Not Google, or Microsoft, or your HMO, or the VA, or some kieretsu involving Big Pharma, Big Software Companies and Big Equipment Makers.

This requires classic VRM: tools of independence and engagement. That is, tools that enable the patient to be independent of any health care provider, yet better able to engage any provider.

In other words, while the answer needs to be systematic, it does not need to be A Big System (which I fear both BigCos and BigGovs whish to provide).

The answer needs to come from geeks who know how to eliminate big problems with simple solutions. For example,

  • Consider how the Internet Protocol solved the problem of multiple networks that didn’t get along.
  • Consider how email protocols such as SMTP, POP3 and IMAP solved the problem of multiple email systems that didn’t get along.
  • Consider how the XMPP protocol solves the problem of multiple instant messaging systems that don’t get along.

We need new ways of organizing our own health care data, and communicating that data selectively to trusted health care providers through open and standard protocols (that may or may not already exist… I don’t know).

I wanted to get those thoughts down because there’s a bunch of stuff going on around health care right now (including two conferences in Boston), detailed to some degree in Health Care Relationship Management, over at the ProjectVRM blog.

* On WBUR, a Boston station I pick up here in Santa Barbara over my Public Radio Tuner.

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  1. francine hardaway’s avatar

    VRM is part of it. I’ve written a lot about this subject, both on US Health Crisis and in my own blog, and until the existing data can be mined and be searched, uploading my own health records as .pdfs, faxes, and the other crummy formats you get test results in will be impossible for the individual. Even I, a very motivated and knowledgeable person, despair of having a complete record. Privacy is the least of the issues.

    We need XBRL for health care. Backwards compatible with films and paper:-)

  2. Stephen Howard’s avatar

    I realize that it doesn’t really deal with VRM issues but I found Zeke Emmanuel’s talk on health care reform at the Commonwealth Club of California a thought provoking presentation on where we might/ought to go with reform.

    That’s realaudio. If you prefer an mp3 I’ve linked into their podcast archive here:

  3. Lori’s avatar

    I agree with much of what you have hear. Only thing is, I’m not sure that every person (or patient) will want to take control of his/her records or record-keeping. While the actual mechanics of entering data is fairly simple in Microsoft HealthVault or Google Health or any of the other PHR platforms that are currently in existence, it is still going to require diligence. They won’t create or maintain themselves. What are your thoughts on it?

  4. Bruce Fryer’s avatar


    You’ve described what I’m building for the new company. NIH has some nice open-source standards they’re encouraging adoption as a framework (SAML et al). It’s policy based access to the information. It’s up to the patient to decide who gets access to what information, when. And they can retract it at any time. Persistence is out. Just in time access is in.

    And that is a solution that works for everyone involved.

  5. Bob Boynton’s avatar

    Privacy: it needs to be as good as your bank. Anyone who wants their health records more fully protected than their financial records is not thinking very clearly. There are already institutions that can do that well — banks, for example.

    For the consumer: building the ‘backend’ is fine, but it will not be used unless it is as easy to use as your credit card. Carry the identifying information around in your wallet, and give it to the receptionist of the doctor/hospital to access the records for diagnosis and reporting. Retail establishments and credit card companies have no difficulty with similar transactions. It seems like it should not be impossible to do it for health care.

    Someone needs to do it. Banks charge us very little because they make money with the money we have them ‘hold’ for us. Credit card companies make money when we do not pay on time. Someone in the health care system needs to be identified who will find it to their advantage to do the record processing. I doubt if that is the federal government. They are a monopoly and they often get by with lousy service because we elect representatives who get themselves elected by promising to cut our taxes without bothering to say what that will do to the roads, sewers, etc. And it is not likely to be health insurers who would be delighted to charge based on all the information they have about you — making it something other than ‘insurance.’

    It would be nice to save lives.

  6. Bob’s avatar

    If we think we are going to fix healthcare just with “connectivity” and sharing of information, we are a long way off. Healthcare information already has standards such as HIE, HL7 where systems can communicate to one another effectively. These standards have been in place for years but “people” get involve and then the privacy issue gets beaten to death. Look at the Financial System. It has been “connected” for years and look at the mess it is in.
    Payers (HMOs) want to make the least amount of payments, Physicians want to charge the most amount, hospitals want the most re-imbursement, so when you think about it, everyone is working on different corporate goals. I don’t think connectivity will solve all of our problems

  7. Doc Searls’s avatar

    Did anybody here say connectivity would solve all our problems? Or any problems?

    The mess is terribly complex, which is why I’ve mostly avoided it. Good people, far more interested and involved than I, are on the case.

    Still, I gotta ask… Are we going to improve health care without better record keeping and data exchange than we have now? Is there a way to do that without digital involvement?

  8. Brett Glass’s avatar

    Doc, you’re missing another serious danger of EHR. With EHR, an insurance company can look through your entire medical history — back to birth, if necessary — to find some “pre-existing condition” to use to disqualify you from coverage or deny you reimbursement for treatment. If comprehensive EHR is to become a reality, we also need a single payer, cradle to grave health care system.

  9. Doc Searls’s avatar

    Brett, I agree. That’s where it goes. And where it needs to go.

    As long as risk of exposure remains a cornerstone of health care calculations (by freaking everybody), we remain irretrievably fucked.

    As somewhat of a libertarian, I have always been opposed in principle to government-run health care. But the private system we have is broken behind hope. It cannot be improved and remain private. There is too much data that is either tainted or absent for fear of lawsuit, exposure of prior conditions and so on.

    The only way to fix it is to get rid of worry about that exposure, and the only way to do that is with a single payer system.


  10. Autistic Blogger’s avatar

    As someone with a disability I oppose government run health care as well – as I would be seen as less important then any of the other people.

  11. Andy Stones’s avatar

    I agree with the you. Yes the recording of medical record will definitely helps in near future and moving of the record would be very easy. Let say as soon as the test reports are out of the lab doctors are immediately notified alongwith the patient about the report. It will save alot of time and money. EMR if applied corectly is the future of medical sector.

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