Bloggers rally for health data rights

WASHINGTON -- 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 www.healthdatarights.org.

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.

Dr. David Kibbe, a technology adviser to the American Academy of Family Physicians and one of the Declaration organizers, said that when patients get their records -- especially in computerized format -- they can use the information to improve their health. They can use the Internet to do research on their medical conditions, for example, get second opinions from other doctors and share information with other patients.

He said some doctors worry that a patient asking for his or her records may be contemplating switching doctors or suing, and patients often feel too embarrassed to ask for information they have a right to see. Kibbe said he hopes that doctors will eventually post the Declaration in their offices to make the process more comfortable -- and commonplace.

"There are quite a few physicians out there who are very eager to do this, and we want to give them an opportunity to offer this to patients more openly," he said.

One of the two dozen or so bloggers participating in the rally is Dave deBronkart, a Nashua, N.H., kidney cancer survivor who discovered this spring that the information his hospital, Beth Israel Deaconness Medical Center, exported to a Google Health personal health record was riddled with inaccuracies and omissions. After the Globe ran a story about deBronkart's records, the hospital announced it would take steps to make the data more complete and accurate.

"The first question is, 'Whose data is it anyway?'" said deBronkart (check out his blog). "Whose life is affected by the quality of this data? .... To me, as that Declaration says, this is an inalienable right."