October 8, 2007

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Putting patients in control of their own health care data is a Good Thing. Each of us should have the means to accumulate and store personal health care data as we move through various care systems, from routine interactions with doctors to emergency room visits to relations between ourselves and the insurance companies, hospitals, schools and other institutions that have a bureaucratic interest in our health.

I believe that many of our health care problems, including the high number of people killed each year by bad or absent data, can only be solved by a fully decentralized system, rather than by a centralized one (or ones) run by governments, businesses, or some combination of both. Unless the individual patient is the point of integration for health services, we’ll continue to have a system that consists of multiple silos, each with their own separate data stores, each raising the risks of error and ignorance, which in health care can too often mean the difference between life and death.

As it happens, this is (to me, at least) one of the holy grails of . It is the single VRM “vertical” into which the whole world fits.

Joe Andrieu, who has done some of the best thinking around on the VRM subject, points us MIcrosoft’s , a new services provides a way for individuals to manage their own (and their family’s) health care data.

As Joe pionts out, it says the right stuff…

  When it’s your job to protect your family’s health, you need every advantage. Imagine if you had a way to collect, store, and share the health information critical to your family’s well-being.

  HealthVault is the new and FREE way to do just that.

  Imagine controlling the flow of your health information. Whether you need to search the Web for the most up-to-date treatments, catalog existing health records, receive test results, or monitor current physical readings — HealthVault gives you the control you need.

Also,

 
  1. The Microsoft HealthVault record you create is controlled by you.
  2. You decide what goes into your HealthVault record.
  3. ou decide who can see and use your information on a case-by-case basis.
  4. We do not use your health information for commercial purposes unless we ask and you clearly tell us we may.

There’s a privacy policy. Far as I can tell it’s okay. For the purposes of this post at least, let’s give it the benefit of the doubt.

I just signed up for it. Turned out I had an ancient PassPort account with a password I actually remembered, but that the system declared too weak, so I had to choose a new non-memorable (strong) one. A pointer toward help doesn’t quite get you there, but I puzzled my way to something I had to write down.

Anyway, now that I’m inside the thing, I’m not sure how this is going to work for non-obsessed civilians. Which is to say, filling it with useful data takes work, a lot of it manual.

Before I do that, I’d like to ask the HealthVault folks (and the rest of ya’ll) a few questions. (Some of these are also Joe’s.)

  How can I get data out again? Specifically, is there an API that will allow me, at my discretion, to share the data with parties of my own choice? Or to move the contents of my vault to another container of my own choosing?

  What if any of my data, or data about my data, is locked out of my control? That is, what cannot be copied out or removed by me?

  Is this a system that only works with Microsoft-approved “partners” of one kind or another?

  What are the data formats being used? Are they standard and open?

  Does the system welcome the development of standard mechanisms by which my doctor and other health care providers can put data into my “vault”? (Terrible term, by the way.) For example, I would like my future diagnoses and treatments to be copied, by my permission, from my provider into the “vault”. I would also like be able to share that data, at my discretion, with other providers should the need arise. Far as I know these systems are not yet in place, or fully in place. Whether they are or not, I would like them to be built on open standards and to use open data types, rather than ones controlled by Microsoft or any other company. Or .org. Or .gov. Or whatever.

  How about transaction records? Those are valuable too.

  How about interactions between health care providers and insurance companies? I would like to be copied, automatically, on every insurance payment submission by a health care provider to my insurance company or companies.

The idea behind VRM is to enable buyers and sellers to build mutually beneficial relationships. In fact, that’s the mission statement we came up with a week ago today. I think the way to do that is with tools that make the buyer both independent of seller control, and better able to engage with sellers — in ways that work well for both parties.

The key is independence. If HealthVault is yet another system for creating dependencies that trap individuals into coercive relationships, it will fail. If it’s a system that brings a new and better way for patients to relate to health care providers — without trapping the patient inside a closed system — that would be cool.

And it will also just be a beginning. There’s a long way to go with this one. But if the paths are open, we can get there. If they lead to more silos, we’ll be wasting our time.