Who controls your personal information?

Doc Searls is a long time blogger, a deep thinker, a co-author of the seminal Cluetrain Manifesto, an open source wizard, and too many other things to mention. He is held in massively high regard by all the social computing pioneers I’ve met over the past five or so years. He’s currently on a mission to invert the relationship between us and the data about ourselves. Instead of repeatedly providing different cuts of information to everyone with an interest in us, we actually hold the information once and let it out according to need. (If you’re reading this, Doc, I apologise for the horrible simplification.)

Doc recently found himself in the world of his namesakes – doctors. He’d undergone a medical exploration which resulted in him contracting pancreatitis. This in turn resulted in hospitalisation and a period of considerable discomfort. After watching the progress of his illness, it was good to follow his recovery and eventual discharge on Twitter. (Why do I care? Because I met him a few years ago and thought he was a good egg with some interesting insights.)

Not surprisingly, on his emergence from the ’health care’ system, he had a few words to say on the madness of big systems which are not at all patient-centric, despite any assurances to the contrary. You can read his blog post for the specifics of his situation. The key point is that we know a lot more about ourselves than any doctor can hope to absorb from a medical history.

In his blog post, Searls chose to cite Fred Trotter, a US citizen amd open source software advocate, who said “Given current primary care reimbursements, my doctor is incented do everything in his power to spend under 10 minutes talking to me.” I don’t suppose it’s hugely different anywhere else in the world. They just don’t have time to unearth the key facts that lie in our medical history and, of course, the stuff that *we* know that lies outside our medical records is totally inaccessible.

In our own family, we make great use of a cranial osteopath. None of the information relating to his work finds its way into our official medical records. I also know that dairy products affect me within a few minutes of consuming them, but I’ve never bothered to share this information with the doctor. In fact, I rarely go to the doctor. The last time I went, I had a very swollen eyelid which, as well as looking unsightly, was causing double vision. The doctors in the local practice and the the hospital were all baffled. After several weeks of unsuccessful experimental treatments, I ran into a friend in the street and she said “that’s an allergic reaction.” She was right, we’d bought a goose down duvet just before the eyelid swelled up. I didn’t bother to tell the doctor. It’s still in the official records as ’lid-lag’.

There is a point to all this, and that is that we should somehow (no-one’s figured out the details yet) become the custodians of information about ourselves, letting it out to others under our control. Doc Searls and Adriana Lukas are just two of the people who are investigating slightly different flavours. It’s a bit like the early days of social computing, a bit ’wild west’, but the fundamental ideas make sense. It’s been christened VRM (Vendor Relationship Management) which strikes me as a bit restrictive, even if it does resonate with and oppose CRM.

If you’re interested in keeping up with, or contributing to, progress then you might like to head over to the ProjectVRM blog.

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