I’m announcing my support for the Declaration of Health Data Rights, which was launched today. More information is available at HealthDataRights.org. The declaration reads:

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. We the people:

• Have the right to our 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 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
• 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 support the principles of the Declaration. Clearly, to me, this is one important step (out of many) to empower consumers with information. We know, however, that being able to access clinical and administrative data is just the beginning of that process.

As I’ve written before, we need to build on data access rights to help translate data into understandable, meaningful information. Then, we have to build tools to translate good information into user knowledge. Finally, with that base, we need to create strategies for converting knowledge into behavior.

This entry was posted on Monday, June 22nd, 2009 at 9:04 pm and is filed under Consumer empowerment, Engaging Consumers, The New Health Care Consumer. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.