WASHINGTON - Lawmakers, corporations and activists joined today to urge Congress to protect patients' medical privacy rights. Activists say such rights are not adequately protected, especially when it comes to electronic health records.
At a Capitol Hill briefing sponsored by the Coalition for Patient Privacy, at least 46 states, national organizations and corporations, including Microsoft, petitioned Congress to include adequate patient protection in any healthcare IT legislation it may pass.
Today's request is based on the Coalition's extensive 2007 patient privacy principles and calls for privacy that applies to all health information regardless of the source, the form it is in, or who handles it.
According to Deborah Peel, MD, founder and chair of Patient Privacy Rights, the Coalition developed the privacy principles to serve as standards for legislation. Today's effort is just a small part of a greater effort to curtail passage of currently proposed federal healthcare IT legislation that Peel said offers consumers no control over access to personal health information.
Today's briefing follows the coalition's endorsement of Microsoft's new patient-protected personal health record platform announced last week - a product Peel said is based on the coalition's privacy principles.
Frank Torres, consumer affairs director at Microsoft said protections such as those defined by the oalition are needed to ensure the creation of a healthcare IT ecosystem that consumers can trust. "We can empower people to lead healthy lives, while putting them at the center and in control of their health information," Torres said.
In Peel's view, privacy protections must follow the data. "There should be no secret health databases, and no one should be able to access personal health information without informed consent," Peel said. "All Americans want their children and grandchildren to be judged on their abilities, not on their health or genetic records."
Rep. Ed Markey, (D-Mass.), chair of the House Privacy Caucus, was a speaker at today's briefing and one of the signers of the letter to Congress.
"Medical information is probably the most sensitive and personal information that we have about ourselves," Markey said. "Without strong privacy safeguards, a health IT database will become an open invitation for identity thieves, fraudsters, extortionists or marketers looking to cash in on our medical histories."
Markey said he would be working with Congress to craft legislation that both promotes the use of healthcare IT and preserves patient privacy. "A nationwide, seamless, effective health IT network holds tremendous promise in terms of better coordinated care, reduced medical errors and reduced costs," Markey said, "but in order to fulfill that promise, such a network must have tough privacy safeguards."