A New Media Rallying Cry for Health Data Rights

Posted June 23, 2009 by Lygeia Ricciardi 

A Declaration of Health Data Rights posted yesterday night has gained significant attention from traditional media and the Web 2.0 world. Media coverage includes blogs by the New York Times, the LA Times and the Huffington Post, among others. 

The content of the declaration is a straightforward and concise rallying cry for better, easier access for patients to their own health data–and the freedom to use it in a variety of ways: 

"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."

The declaration was developed collaboratively by a group of 100 or so volunteers, including doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others "who share a common goal of greater health data availability.”

Endorsing organizations include numerous Health 2.0 companies, as well as Microsoft, Google, Dossia, WebMD, Partners Healthcare, the Center for Democracy & Technology, FasterCures, and TEDMED. As of this posting there are nearly 600 individual endorsements as well, many of which were made directly via Twitter.  

Part of what is interesting about the declaration, in addition to its content, is the mechanism of harnessing of social media to push for change and greater awareness. Endorsers are encouraged to follow the effort on Facebook and submit a video of themselves reading the declaration aloud on YouTube.

Disclosure: While the statements in the declaration would appear to contribute to the efforts Project HealthDesign supports, the Project has not officially endorsed the declaration, (though I have done so personally as an individual). 

Comments

[Shawn]

The pesky universal problem remains unsolved. Whose records are whose? How to uniquely identify someone and their records becomes central to the function of the system, platform and It all comes back to identity management and security. Is this only going to create a similar mess to the credit reporting systems?