A new push for health data rights

A coalition of health IT reformers today offers a Bill of Heath Data Rights aimed at moving the heart of the health IT debate away from doctors and insurance companies, toward patients.

A coalition of health IT reformers today offers a Bill of Heath Data Rights aimed at moving the heart of the health IT debate away from doctors and insurance companies, toward patients.

This is the brainchild of former Google Health executive Adam Bosworth and Patientslikeme co-founder James Heywood. My copy was forwarded by David Kibbe.

The actual proposal is postcard simple:

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

  • Have the right to their own health data.
  • Have the right to know the source of each health data element.
  • Have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost. If records exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
  • Have the right to share their health data with others as they 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.

The expected reaction from the industry is "yeah, but." Yeah, but it's not that simple. Yeah, but most people don't care. Yeah, but how do you express that in software.

The hope is that the principles behind HIPAA can be maintained while the costs of HIPAA, and the use of it as a smokescreen for luddism by the health IT industry, can be foregone.

That's a big hope for such a short document.

I'm afraid that if this became part of some law passed by Congress it certainly would become a new HIPAA law. But if NCHIT David Blumenthal can convince the President to make this part of an executive order, something that exists in spirit and is defined on-the-fly, it might be worthwhile.

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