A mix of lawmakers, corporations and activists met Friday to urge Congress to protect the privacy of patients’ electronic health information, which activists from the Coalition for Patient Privacy say are “vulnerable and exposed.”
Representatives from at least 46 states, national organizations and corporations, including Microsoft, petitioned Congress to include patient privacy protection in all future health IT legislation.
The petition followed the coalition's endorsement of Microsoft's new patient-protected personal health record platform. Microsoft said that the privacy protections defined by the coalition are “needed to ensure the creation of a healthcare IT ecosystem that consumers can trust.”
According to Deborah Peel, MD, founder and chair of Patient Privacy Rights, 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."
Representative Ed Markey, D-Mass., chair of the House Privacy Caucus, spoke at the meeting saying, “Medical information is probably the most sensitive and personal information that we have about ourselves. 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 create legislation that promotes the use of healthcare IT while preserving patient privacy.