Health care or Health snare?

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.

28 comments

  1. David Kearns’s avatar

    >>Unless the individual patient is the point of integration for health services

  2. blog.px » Blog Archive » M$ wants your health’s avatar

    [...] wants your health After reading Doc Searls’ post Health Care or Health snare, I decided to try out M$ HealthVault and see what if any use it would be to me. Boredom ensued, and [...]

  3. Frank Paynter’s avatar

    There is a lot of data exchange in the health care industry, most of it between insurance companies and hospital billing departments. Hospitals and clinics often think that the medical records of a patient belong to the institution. Finding a point of entry to get our lab results, copies of our x-rays, records of our physical exam data in our hands to share with a range of vendors as we see fit is a worthy challenge, an ideal application for Vendor relationship Management.

  4. Russell Nelson’s avatar

    Doc Searls … he’s not an actual doctor of medicine, but he knows freedom of health care when he sees it.

  5. franKnarf’s bloGolb » Blog Archive » Do you feel warm?’s avatar

    [...] Doc has a few thoughts on the matter too. IMHO, the essence of the problem is that I do not believe anyone has a larger interest those [...]

  6. Geoff’s avatar

    I’ve been thinking on these lines too. Except I thought you could store your data on a memory stick and have the ability to sell your own data for longitudinal studies

  7. Tirekicking HealthVault « Jon Udell’s avatar

    [...] Filed under: Uncategorized — Jon Udell @ 2:13 pm Doc Searls likes the idea behind HealthVault, if not the name. Along with Joe Andrieu, he’s asking reasonable questions [...]

  8. Doug K’s avatar

    ” 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”

    Why do you believe this, given the successes of the VA (centralized) system ?
    http://www.washingtonmonthly.com/features/2005/0501.longman.html

    As I noted in my own comment on HealthVault, the doctors and hospitals consider my medical records to be part of their competitive advantage. They don’t usually release them to mere lowly patients, only to insurance companies.
    For this if no other reason, HealthVault won’t fly.

  9. jeneane’s avatar

    AND I want it in a widget for facebook.

    (Alright I’m only kidding. I actually just want my allergy list as a widget because people don’t believe me when I say I’m allergic to Buckwheat. And because it would be fun to jab facebook friends with an epi-pen.)

    Come to think of it, I might want the photos the surgeon took of my ovary being removed automatically sucked into Flickr too. That’d be kind of wicked.

    Thank you.
    -The Vendee

  10. echovar » Blog Archive » The Doc Is In: Health Vault’s avatar

    [...] Doc Searl’s weighs in on Microsoft’s HealthVault. The same issues come up over and over again. Big companies like to build systems that lock you in. They call it stickiness (In the manner of a fly trap). The questions are obvious at this point— can I take my data and leave? Can I run my data through a value-add analytic provided by another provider? If I can’t move it, in what sense is it really mine? Searls calls health info the holy grail of vendor relationship management. I call it the official definition of Web 4.0. [...]

  11. echovar » Blog Archive » The Doc Is In: Health Vault’s avatar

    [...] Doc Searl’s weighs in on Microsoft’s HealthVault. The same issues come up over and over again. Big companies like to build systems that lock you in. They call it stickiness (In the manner of a fly trap). The questions are obvious at this point— can I take my data and leave? Can I run my data through a value-add analytic provided by another provider? If I can’t move it, in what sense is it really mine? [...]

  12. Doc Searls’s avatar

    Doug, the VA’s success story is an isolated one. And, as that article says, centralized government-run health care is at political odds even with the current administration.

    What I’m proposing here is not a new health care system, but rather an approach to personal health care that will improve the data on which all the disparate sytems we face can operate.

  13. JTH’s avatar

    First thought was HillaryCare meets Billy and Steve (Gates & Ballmer)

    But concept is interesting
    I keep my vitals on spreadsheet (annual bloodwork, BP, etc etc etc) and my HSA provides log of scripts/billings for procedures as well as tips on cost savings… for instance, Rx for 2x dosage and cut pills in half – saved a bundle this year.

    I’d also look at ties to sources like WebMD or http://www.nih.gov/ for data on conditions, tips etc.
    Boomers will be looking more and more for help/ideas etc. Esp. as employers, private as well as public, push more responsablity to the employee for their own well being and we see more push for preventive medicine.

    Sorry that PCForum is no longer, Esther did a lot of talk in this area a couple years back.

    Ciao

  14. CCUCEO’s avatar

    Microsoft Announces HealthVault…

    From ZDNet: Microsoft plans medical-record service Interesting. And it’s a good step, one that’s in the right direction. It’s not perfect. But…we can build on it, so to speak. The first thing I thought when I read it was…target-rich environment….

  15. Adrian Gropper’s avatar

    It depends what Doc means by “decentralized”. Scattering my private health information among the uncountable labs, clinics, schools and hospitals that provide services to me may be decentralized but it simply turns the privacy problem into an identity management problem. It’s easier to think about my information as an aggregated portfolio with simple interfaces and clear access controls.

    A fully decentralized system is possible if one assumes a constellation of HealthVault-like hosts competing for each consumer’s medical portfolio account. To the extent that it has standard Web interfaces for content management and single sign-on, a HealthVault account is just one example of a HealthURL: a global address associated with exactly one individual – just like OpenID.

    http://adrian.medcommons.net/2007/10/12/patient-id-on-the-internet/ is a short paper I just posted that links OpenID to HealthURL.

  16. Acai’s avatar

    There’s much to be desired in today’s medical establishment which can’t hurt by decentralizing the database of millions of patients’ records.

  17. Acai Berries’s avatar

    Do you believe this is going to be a mainstream solution for medical establishments around the world or do you think this will be something that will be a fad for the immediate future?

  18. wWorkouts’s avatar

    If you could get this to work in the emergency department setting somehow, I think patients could receive better care. It is hard to collect patient data when they are in distress.

  19. Acai’s avatar

    There’s much to be desired in today’s medical establishment which can’t hurt by decentralizing the database of millions of patients’ records.

  20. Total Cleanse’s avatar

    You are right Russell. Doc Searls is not an actual doctor of medicine, but he DOES know his stuff. And I second the Facebook widget!

  21. Free Acai Berry’s avatar

    Security is the main issue in decentralizing patient data throughout the country. If patients feel comfortable with the security models in place, adoption of new systems will be quicker.

  22. Acai Berry’s avatar

    As stated by the author, a “fully decentralized” healthcare system—a system that would successfully place patient information under the responsibility of the patient and not a biased agency—is a perfect illustration of how VRM works for everyone’s benefit. With the control wrested from the seller and returned to the buyer, the terms of the relationship are then set by the consumer, enabling a fair/clear path of communication. But, as the post states, this responsibility will take time and work. If we are willing, much good can come from this.

  23. Acai Berry Reviews’s avatar

    I have to say…this is an excellent idea. .

    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.

  24. Colon’s avatar

    “Do you believe this is going to be a mainstream solution for medical establishments around the world or do you think this will be something that will be a fad for the immediate future?

    I think its very possible

  25. Ed’s avatar

    I enjoyed this article on health care :). Hey, i have a site on wellness and health, as well as cleansing and acai, be sure to stop by the Total Cleanse Guide

  26. Roger Prozac’s avatar

    Decentralized system …
    Each hospital has the own way and system for taking care of patients not have to depend on the center. This can satsify customers better.

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