As Congress dickers over the shape of patient protection legislation, some lawmakers are quietly readying related bills that aim to impose national confidentiality standards on patient records.
At least two records privacy bills might be introduced this week. But as is the case with patient rights bills, no clear consensus has emerged in Congress on how to balance the needs of the changing marketplace with the public's desire for protection.
For providers, a key issue is whether the federal standards controlling the flow of patient information from their files will be too cumbersome.
Researchers warn that damming that flow could interfere with research into treatment outcomes and the effectiveness of new types of treatment or medical technology. That, in turn, could slow providers' quality improvement efforts.
"If Congress errs on the side of overprotection, we could stifle medical research and innovation," said Rep. William Thomas (R-Calif.), chairman of the House Ways and Means health subcommittee, who spoke at a hearing on records privacy last week.
"If we fail to provide the American people with adequate reassurance . . . some may avoid or delay or exhibit protective behavioral patterns when it comes to necessary medical care," Thomas said.
At least two factors are driving congressional action. The White House Advisory Commission on Consumer Protection and Quality in the Health Care Industry called for confidentiality of patient records in its "patient bill of rights" released last year. In addition, a 1996 insurance reform law requires Congress to pass privacy standards by August 1999 or allow HHS to develop national standards.
Despite the lack of consensus, confidentiality standards could well pass this year as part of patient rights legislation, observers say.
Senate Labor and Human Resources Committee Chairman James Jeffords (R-Vt.) might introduce a privacy bill this week, according to a spokesman. Sen. Robert Bennett (R-Utah), who sponsored records privacy legislation in 1995, reportedly is considering becoming a co-sponsor.
Bennett has circulated draft legislation that would require providers to obtain a single form from patients allowing disclosure of medical information for use in treatment, payment or healthcare operations. The same requirements would apply to employers sponsoring health plans, as a condition of enrollment.
Jeffords' spokesman said Jeffords still is negotiating with Bennett over the shape of the bill.
"We're at the stage where we either go to the altar or find separate suitors," he said.
Jeffords is chiefly concerned with maintaining consistency in researchers' use of medical records, giving states the ability to pass their own confidentiality legislation and ensuring that employers who directly sponsor employee health plans do not misuse their employees' medical records, the spokesman said.
An industry lobbyist expressed concern about Jeffords' role in introducing the legislation, however. "Jeffords undoes the good stuff that Bennett has done," said the lobbyist, who asked not to be identified.
In the House, Rep. Christopher Shays (R-Conn.) is preparing to introduce a similar measure this week. Under a draft of Shays' bill, providers would be required to tell patients how they generally will use their medical records and who will review them to get authorization to disclose them.
Thomas also is likely to draft a bill to ensure the free flow of patient data to researchers, according to a subcommittee aide. Thomas last week expressed fear of a "crazy quilt" pattern of state privacy laws if states are given the authority to pass their own laws.