Bloggers rally for health data rights

More than 30 bloggers from the medical, technology and patient advocacy worlds are rallying to support patients’ right to obtain copies of their computerized health records from their doctors in the electronic format.

The Declaration of Health Data Rights — arriving just in time for Independence Day — says that patients should have the right to obtain “a complete copy of their individual health data, without delay, at minimal or no cost,” in computerized form, if it exists. It also says the sources for all the data should be clear, and patients should be able to share their information as they choose. Information about the effort and posts from participating bloggers are at

Federal law already entitles patients to easy, cheap access to their health records in whatever format they exist, said Deven McGraw, director of the Health Privacy Project at the Center for Democracy & Technology. Too often, she said, patients, doctors and hospitals are not aware of the law.

As more doctors and hospitals adopt electronic medical records systems with the $19 billion in subsidies Congress approved as part of the stimulus package, patients and their doctors need to have a clearer understanding of that right, McGraw said.

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