Declaration of Health Data Rights: Aux Barricades!

And so it has come to this: A declaration of human rights about . . .health information technology.

A group of thinkers, leaders and potentates in the patient-centric wing of the Health 2.0 movement, gathered under the banner HealthDataRights.org, has hammered out the following declaration:

Declaration of Health Data Rights

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 data 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.

[Interest declared: I know a lot of these folks from the Health2.0 world, and was approached to endorse the statement and to blog about it at 9:00 p.m. on the 22nd day of June in the year of our lord 2009. I agreed because, well, I agree.]

This is important and timely stuff.

At a moment when vast amounts of federal cash are being spent on Health IT [HIT] in service of health care reform, it’s important to have the interests of patients plainly and publicly declared.

Why?

The most visible and active “stakeholders” in discussions about HIT so far have been–stop me if you’ve heard this one before–commercially self-interested players who may not [or, to be fair, may] have patient rights regarding what happens with the “I” part of HIT top-of-mind.

These HIT stakeholders include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.

They all have the usual “access” to the the HIT policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.

And so yes, it’s essential to ensure patients are represented in the midst of all this–and to declare patients have access to, knowledge about and [some] control over their personal health information.

And, if necessary, to call the People to arms to demand it.

Though I think they use Twitter for that these days.