Alain Rappaport, M.D., Ph.D. the General Manager of Health Search, Health Solutions Group of Microsoft spoke at the Hearst Mining building today about an integrated health care system.
His lecture was about taking the strange mass of medical information which confronts a medical patient, and trying to integrate it, and present it to them, and other authorized parties in such a way as to become comprehensible. This is desirable so informed decisions can be made about their personal care. At present the patient has many relatively independent, and non-communicating groups of people, and information bases to contend with such as: a personal physician, a hospital, various drugs, various pharmacies, and their records, insurance companies, the disease itself, personal DNA and SNIPS, personal history, drugs with strange names presently being taken, personal allergies, and with the sickness a probable personal depression precipitated by the disease, and the complexity of it all. Then come the relatives, and their demands, strange new environments to cope with, remembering all sorts of stuff, new transportation needs, really complex legal problems, and much much more. All of these problems must be coped with by the person while they are sick, old, perhaps dying, with a loss of mental acuity, and possibly without money or possibly with a lot of money which they don’t want stolen.
What this HealthVault is proposing to do is to combine all of these complex, disparate and confusing items into a single depository which is available, and controllable by the patient or their guardian. This information needs to be stored in a totally secure environment, but be readily accessible to the patient and whomever they choose to have access to their very private information. This obviously provides great opportunities for invasion of the person’s privacy, and therefore security must be carefully maintained. But the sick person desperately needs the various entities to communicate with each other to maximize the chances of getting well, or at least as healthy as possible. Or in the last resort have their will, and living will be available for reference if it is needed.
With the advent of modern computers, and the Internet many of these disparate items can be coordinated, but as of now they haven’t been.
The lecture was accompanied by an appropriately large number of detailed slides, but as they were labeled private I respected that request and didn’t take any screen shots.
There was an after the lecture conversation, with snacks, in the beautiful Hearst Mining building foyer. About eight of us discussed many of the issues which Dr. Rappaport had raised. As usual I felt out of my depth, and ill at ease but I tried to think up really fundamental, and pertinent questions. I think my efforts were valued because he seemed to direct quite a lot of time, and effort to answering them. One of my questions concerned how he was going to cope with the six point seven billion people who would be interested in his services. He seemed a bit shocked by the question. What he sees as a very complex operation for even a few people would be unimaginably complex for so many people. But, obviously everyone will want his services if they can be provided. He said, among other things, that it would cost an awfully lot of money to set up such a thing. To which I agreed, but said that this is where Wiki like organizations, if they can be set up, make it possible for people to step in and help. If the problem was framed in the right way, much of what he wants to happen would self assemble, and happen automatically. He was of course worried that this is a commercial undertaking, and that his parent company would like to control these things. To which I countered that it would probably work out to be more profitable for their company if they could control a few really critical things — the containers of the information — and let the public control the information. That he should try to create a system that people could plug their medical information into much like people now put private information into Wikipedia, Facebook, Flickr, YouTube and WordPress. He would control the security, and the stored information, but all of the material that relates to the patient would be put into their private HealthVault themselves as they discovered it. This could be any, and all of the complex of disparate materials listed above, and his system could store, secure, inter-relate, cross-correlate and data mine the information. The system could also suggest interesting possibilities such as Netflix suggests possible movies based on the person’s previous input. By creating this open vault with personal storage boxes for each person a relatively cheap, but comprehensive medical data bank could be created for every person on earth.
That is basically what I said. The Cal photographer was there for the whole lecture and also for the after lecture conversation. She took a lot of flash pictures. I noticed that I was probably in several of them so it was an opportunity to ask a question, and start a conversation. Perhaps a photo will appear here if she sends me one. She said she was the photographer at the Andy Grove lecture also, and since I spoke with him briefly there is possibility that she has a photo of me at that memorable moment.
If I were making this a project I would name it WikiYou. A Google search finds that that name is already taken. That site is an attempt to make a biography of every person on Earth. Perhaps this new medical database could be a subsidiary of the already existing WikiYou because health is only a part of the whole person and their history.