If you've ever had to work through even a slightly complicated encounter with our health care system - you know what it's like. You become a combination archaeologist, file cabinet and pack mule, begging providers for copies of your own images, lab results, medication lists, and encounter notes, then trying to make sure they're in front of the right people when decisions are made. Really, it's just nuts.

Tools like HealthVault help solve part of this problem - we are working hard to build connections to all of those places where your data lives, making it easier to create a comprehensive data asset and share it with all the members of your extended care team: providers, family members and, increasingly, innovative consumer services that use the power of software and social networks to create insight.

But in order for software to matter, our culture and attitudes need to change too. As I travel around the country working to help organizations share data with individuals, I consistently hear objections that reflect that challenge, even though HIPAA already says they are required to share on demand:

  • People won't know what to do with this information; they need providers to filter it for them.

  • If people see the raw data, they'll overwhelm providers with irrelevant questions.

  • Sharing information could increase liability risk.

  • Misuse of "their" information could damage a provider's brand.

  • Sharing information gives away a competitive advantage to a provider's business.

  • ... and more.

Right now, there are tons of policy "concrete" being poured into our healthcare system, thanks to ARRA and President Obama's push for healthcare reform. Before that concrete hardens, it is critical that we firmly establish complete access to one's own health data as an unassailable ethical and moral human right.

This is why I was so excited when I was invited to join the group of thought leaders across healthcare working to establish a Declaration of Health Data Rights at The text of the declaration is clear, appropriate and extraordinarily important to the advancement of effective care in our country and beyond:

A Declaration of Health Data Rights

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

  1. Have the right to our own health data

  2. Have the right to know the source of each health data element

  3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form

  4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

Microsoft and I wholeheartedly endorse this declaration and are proud to be part of a growing community that recognizes its importance. If you would like to add your voice to ours, you can get started by visiting

Self-evident indeed.

Comments (4)
  1. joe coyle says:

    While I appreciate the privacy issues associated with pre-existing emrs, perhaps the focus could be shifted to newly created emrs.

    With an emphasis on early identification, education and the resulting intervention more individuals could be ushered into the emr age.

    From my perspective, as a type 1 diabetic with 36 years managing a chronic illness, the healthvault platform makes great sense but many of the individuals I discuss this topic with are really in the dark.  Healthvault may not be as intuitive to others as it is to me.

    Consumers (interchange with patients) are the ones ultimately accountable for their health.   If we don’t include them, we will miss this historic opportunity to create a new ‘platform’ for transforming care in innovative ways.

    An innovative way would be a consumer/patient oriented demonstration vehicle for healthvault.  While the Mayo Clinic, Kaiser Permanente and Cleveland clinic partnerships are exciting, they are too big for the average consumer to wrap his or her hands around.

    I understand that MSFT is looking to partner with healthcare industry leaders so that it might recapture it’s healthcare investment but what about the individual patient?

    Perhaps microsoft could segment it’s heathvault approach into a "chronic illness" category.  The approach would focus on a target population, apply opportunistic one time screening (diabetes, hypertension, renal failure) and allow healthvault to capture the newly created data.  I would think that those with a newly discovered pre-diabetic condition or a newly discovered renal failure issue would jump right on board with heathvault to help them leverage technology in their individual case management stories.

    joe coyle

  2. Dr Rajeev Chaudhry says:

    Health care providers ( including me – a priamry care physician) are the custodians of patient information. It is their information and they need to own it. Health care in US has become more expensive and fragmented with poor outcomes for patients as the information does not travel with the patients, rather it stays in silos. With the result that tests get repeated. If the information was with the patient any provider anywhere in the country will know patient’s history, prior tests, medications etc. so that patients can get timely and appropriate care.

  3. Mark Miller says:

    Ha! I know it’s been a couple of weeks since your post – and btw, thank you for hosting the terrific Connected Health Conference even before that – but I took my Harley in to be serviced today and realized that thanks to a good electronic records system it’s getting better quality care than I do!

  4. Lydell Anderson, MD says:

    I disagree wholeheartedly with Dr. Chaudrhry’s comment that health care providers own patient data.  Yes, they are custodians, but they no more ‘own the data’ than a bank ‘owns’ my money.   This distinction of who owns the money would not matter except in today’s modern society, the patient is now the default custodian of his records – doctors at even the best medical centers (not to mention private practice) have a somewhat haphazard method of getting medical records to other care givers, usually a day late to do any good, and usually in a format that is nonstandard (where is the date on this evaluation?  Who is the patient).  It is a wonder that data doesn’t go into the wrong patient file more often than it does.  

    Yes, doctors should keep their own records, but it should be AUTOMATICALLY dispensed in full to the patient, no coy, secretive wording about the patient behind his back, nothing to hide, just patient data.   Openness will not cause more lawsuits, it will reduce them by increasing trust and decreasing suspicions of inadequate treatment.

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