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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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