Existing laws to protect the privacy of Americans’ health records have glaring holes, Rep. Patrick Kennedy (D-R.I.) said today, and he will introduce legislation to bolster those privacy protections.
“We need a strong privacy law that covers everyone who has access” to individuals’ health records, Kennedy said. One of his aides said the congressman wants to introduce the bill, to be called the Electronic Health Information Privacy Act, in May.
Kennedy spoke at a Capitol Hill press conference. At the event, a coalition of 26 national organizations urged the House to include privacy protections in health information technology legislation now under consideration.
The organizations, which span the political spectrum, wrote to House leaders urging them to support “a patient-centered system with patient privacy rights at the core of the health IT system.”
Deborah Peel, a Texas psychiatrist who heads the Patient Privacy Rights Foundation, said none of the health IT bills pending in Congress provides adequate privacy protections. A bill Kennedy and Rep. Tim Murphy (R-Pa.) introduced last year is “the only bill…that gives patients any control” over who sees their records, she said.
Peel and representatives from the other organizations -- the American Civil Liberties Union, the Electronic Privacy Information Center, the Christian Coalition of America and the Free Congress Foundation -- said they favored adoption of health IT as long as privacy protections are designed into the systems from the start. They cannot be retrofitted into systems designed without strong protections, Peel said.
On the other hand, she said the foundation would not support a national health information network “if it’s simply built to facilitate data mining by corporations and government agencies.”
Kennedy said Congress has failed to pass bills to ban discrimination on the basis of a person’s genetic makeup. “There is too much money to be made off people’s health information,” he said.
The 26 organizations say:
Employers should not be able to access medical records.
Patients should have a right to consent to sharing their records.
Patients should be allowed to opt out of health information networks.
Privacy protections should be more strongly enforced and privacy violations must be punished.
They also said federal legislation should not overrule state laws protecting medical privacy. Many advocates of national health information sharing say the state laws and rules are so out of sync with one another that compliance across state lines is virtually impossible.
