Americans worried medical secrets in new databases will be misused

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Washington, DC – Today, lawmakers will be making decisions about the future of patients’ medical privacy as legislation aimed at pushing the health care industry toward a conversion from paper to electronic health records is due for a vote by a House panel.

The American Civil Liberties Union urges the House Energy and Commerce Subcommittee on Health to amend Chairman John Dingell (D-MI) and Ranking Member Joe Barton’s (R-TX) “PRO(TECH)T Act of 2008”  to protect and secure Americans’ intensely personal health information as it encourages the development of new record-keeping databases.

“You know how hard it is to get yourself or a loved one to the doctor’s office,” said Caroline Fredrickson, director of the ACLU Washington Legislative Office. “Imagine having what’s under the gown displayed in a database without restrictions. If this legislation gets approved, Americans’ medical secrets will be extremely vulnerable to being lost, stolen or sold to the highest bidder.”

The legislation, formally titled the “Protecting Records, Optimizing Treatment, and Easing Communication through Healthcare Technology Act of 2008” would provide grants to health care providers to help them purchase what is known as “health IT,” or health information technology, so that information can be accessed or shared more readily in emergencies or chronic situations by those in the medical community. It would also require the federal government to provide hardware and software standards for databases containing electronic health records.

However, the bill lacks language enabling patients to review their own files, correct bad data, block access to their personal health information or simply opt out.

“Medical privacy should not become a casualty of the race to set up electronic health records,” said ACLU Senior Legislative Counsel Tim Sparapani. “Seventy percent of Americans already fear that federal privacy protections will be reduced in the name of efficiency, and at least a third are not sharing their complete personal medical histories as a result.”

“Congress needs to ensure that Americans will be confident participants in the new systems,” Sparapani continued. “Americans need real patient control, prompt notification of database breaches and fair compensation if the systems fail to fully safeguard their medical secrets.”

For more information about online medical privacy and electronic health records see the June 16, 2008 article in USA Today and ACLU's letter to Chairman Dingell and Ranking Member Barton