A push for the wired Patient’s Bill of Rights
Starting with a few dozen supporters, including health bloggers, individual physicians, startups and Microsoft, a group is seeking to firmly inject the rights of patients into the Obama administration’s multibillion-dollar drive to computerize medical records. The group’s effort begins with a Web site, HealthDataRights.org, which goes live on Monday night. And it is a bottom-up endeavor to harness the power of social media to influence policy and practice as personal medical information begins a years-long journey from paper records into the Internet age. The group’s declaration of “health data rights” states that individuals should have: the right to their own medical information; the right to know the source of each element of information; the right to take a complete copy of their health information; and the right to share their health data with others as they see fit. The government’s current law governing health information, HIPAA, for Health Insurance Portability and Accountability Act, appears to address these issues, but it does not, Mr. Bosworth said. The existing rules, he said, were forged without the digitization of personal health information in mind and tailored mainly for doctor-to-doctor communication.
The New York Times by Steve Lohr June 22, 2009