Federal lawmakers yesterday approved a comprehensive health information technology bill even though patient privacy groups railed against it, saying it does little to protect a patient's most personal information.
The bill, called the Wired for Health Care Quality Act, would create a public-private partnership to make technical recommendations to HHS, require all federal IT purchasers to follow national standards and provide a number of financial grants to help providers purchase, implement and keep current electronic health-record systems and other components of a fully wired practice.
Additionally, the bill, which passed the Senate Health, Education, Labor and Pensions Committee on a voice vote, requires patient notification if records or personal information are breached.
But privacy advocate Jim Pyles, a lawyer with the Washington firm Powers Pyles Sutter & Verville, called the bill "very weak" when it comes to protecting everyday individuals.
"The bill is essentially a health IT bill without privacy protections," Pyles said.
A provision in the bill, he said, would allow two committees to make recommendations to HHS, whether about security and privacy or other aspects of implementing a digital infrastructure. But Pyles said that all too often, such committees are structured in such a way that consumer representation is far outnumbered by other interest groups—sometimes by a ratio of 2-to-1.
"The right to privacy can be very quietly eliminated and the bill essentially prevents the public from stopping it," Pyles said.
Deborah Peel, chairwoman of the Patient Privacy Rights Foundation, said the bill doesn't allow patients to control who can and who cannot access their electronic health records and chided the legislation's authors for stymieing public comment on the matter. "It is unbelievable that the Senate 'leaders' on HIT have omitted what consumers and patients want most: privacy," she said in an e-mail. "There is no way the public will trust a health system that allows access to their extremely sensitive health records by millions of corporations and government agencies."
During the bill's markup yesterday, the committee approved an amendment that would require the American Health Information Community to make recommendations to HHS concerning national policies that would give consumers the ability to control the use and disclosure of their own private information.
Pyles said the amendment was a "small but significant" victory, but urges more action. "We're hopeful that the bill can be improved even further before it's passed by the Senate," he said.
Studies have shown that wholesale adoption of health IT could be hampered if the public perceives that their sensitive health information is not shielded from prying eyes, Pyles said.
Still, federal lawmakers lauded the bill's passage. "It's long past time for the nation's healthcare industry to adopt modern information technology," said HELP Committee Chairman Sen. Edward Kennedy (D-Mass.), who along with Sen. Michael Enzi (R-Wyo.), Sen. Hillary Rodham Clinton (D-N.Y.) and Sen. Orrin Hatch (R-Utah), sponsored the legislation.