A Manifesto on Health Data Rights

As a medical patient, I’ve always assumed that my medical records were something that I had a right to – after all, they are about me, and my freedom to share them with a second doctor, or see them myself so I can understand my own medical situation, seems self-evident. It was only the fact that so many of these records were on paper that made it so difficult for them to be shared. Electronic access would change all that.

I was surprised then, when I met recently with a congressman in Washington, a former physician, to talk about healthcare reform. When we moved to the topic of portable health care records, I was quite startled to hear him say “When I was practicing as a physician, I considered those records to be my property.” After all, he said, they were his notes, his analysis. He obviously still felt this way.

Given this disconnect, I was glad to endorse today’s Health Data Bill of 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.

I urge you to add your voice to mine by endorsing the health data bill of rights.

P.S. If you wonder whether a non-binding manifesto like this can have an impact on the deliberations of government, you have only to look at another similar statement, issued at the end of 2007 by a group of open data activists at a meeting organized by Carl Malamud of public.resource.org at O’Reilly, with support from Google, Yahoo! and the Sunlight Foundation, the 8 Open Data Principles. It was extremely gratifying to recently see the White House blog considering the commitment of the Obama administration to these principles.

Or consider the Robustness principle from RFC 761, the commitment to interoperability that provided a philosophical touchstone for the Internet, and has helped ensure its extraordinary resilience.

Statements of principle do matter. We may not yet have any idea what the exact format of an open health record system will look like, but we don’t need to. If we establish the underlying principle of open exchange, the marketplace can sort out the details.

Health data exchange will unleash one of the great opportunities of the coming decade. Let’s make it happen!

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