Declaration of Health Data Rights

June 24, 2009

bill-of-rights(sm) While I endeavor to keep this blog all about one’s personal health choices and outcomes, There are times where other related interests worm their way into this forum. The recently-released Declaration of Health Data Rights is one of those occasions. Here are the core principles of the declaration:

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.

As you know by peeking at my ‘About’ page, you know that in my day job, I work with the big, bad Microsoft on the HealthVault product (nothing on this blog, by the way, represents my employer in any way shape or form). In the course of this work over the last couple of years, I have been on the vanguard of making personal health records available to consumers. During that time, there has been an enormous sea change in the way this area has been viewed by all involved. I can remember numerous conversations in the summer and fall of 2007 where the idea that patients (consumers) might have any value or inclination to have a copy of their health information.

In short two years, the notion that patients deserve a copy of their own health information has made its way into the national consideration of health care reform as a core assumption (see p.3 of the Meaningful Use Matrix put forth by ONCHIT).

The aforementioned declaration is notable as so many of the supposed adversaries in this brave new world of health information technology. The index case is that both Microsoft and Google have signed on and are co-existing quite nicely here. This is a big deal. It sounds like ‘mom and apple pie’ today, but I can remember a day – not so long ago – when this very idea was considered a little nutty.

First they ignore you, then they ridicule you, then they fight you, then you win.       Mahatma Ghandi

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