The Declaration of Health Data Rights collaborative effort was announced this week by setting forth a simple, straightforward framework for health consumers right to their personal health information.
The social media driven initiative has grown support throughout the week. The effort is being endorsed and supported by a variety of companies/organizations and bloggers. The traditional media has also covered the initiative, including the NYT, “A Push for the Wired Patient’s Bill of Rights,” Boston Globe, “Health data rights declaration gets push,”and the Huffington Post, “Release 0.9 HealthDataRights Beta Version.”
This evening I formally endorsed the declaration and statement of rights (Endorser #793). Read more about the initiave and consider supporting the effort at HealthDataRights.org. You can also follow the discussion on the declaration via twitter at the tag #myhealthdata.
The rights set forth in the declaration are largely supported by existing state and federal law, including changes to be implemented under the new HITECH provisions of the American Recovery and Reinvestment Act of 2009. The declaration serves as a simplified and concise statement of rights that helps to alert and engage patients of the role they need to play as better health consumers. Engaged health consumers play a key role in creating the needed change and improvement in our health care delivery system.
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:
- 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.