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This is a crucial time for confidentiality legislation: The Health Care Personal Information Nondisclosure (PIN) Act of 1998 has been introduced in the Senate, while the deadline imposed by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) for Congressional action on privacy legislation hovers ever nearer.
Mental health advocates and medical specialty societies had cause for concern when the chair of the Senate Labor and Human Resources Committee Senator James M. Jeffords (R-Vt.) and Senator Christopher Dodd (D-Conn.) introduced the PIN Act on April 2. Now, as Jeffords works to schedule a vote on the bill as early as June and Sen. Robert Bennett (R-Utah) prepares to introduce another bill, APAs Department of Government Relations is urging APA members to write to their senators to express their views.
(The Medical Information Privacy and Security Act, a bill from Senator Patrick J. Leahy [D-Vt.], may not emerge from the Senate Labor and Human Resources Committee this year, because of the prominence of the Jeffords bill.
According to Jay Cutler, J.D., director of APA's Division of Government Relations, the next few weeks will likely determine whether any Congressional action will occur on confidentiality this year. The House has scheduled hearings in which APA is expected to testify, but if the Senate effort stalls, the House is unlikely to act in 1998. Meanwhile, Congress will be nearing its August 1999 deadline for action under the terms of the Kassebaum-Kennedy legislation (HIPAA), making it more likely that the Secretary of Health and Human Services will have to step in and promulgate regulations establishing electronic privacy standards in the year 2000.
"Anytime you have the chair of the committee with a major piece of legislation, pressure from the Administration, profit-driven powerful interest groups hungry for freer access to medical records, plus several other pieces of legislation, there is a legislative battle, and it's touch and go 24 hours a day," said Cutler. Now is the time for APA, its members, and patients to present their views to Congress-to "reinforce APA policy of what medical confidentiality should be-patients' informed consent," he said.
According to Paul Appelbaum, M.D., APA secretary and chair of the department of psychiatry at the University of Massachusetts Medical School, the Jeffords bill reflects a trend in Congress in which there is an effort to make medical information more available.
"There is enormous pressure to pass legislation on medical information. But it often seems that the goals pursued by Congress and the Administration are to make medical information more available rather than to protect patients," he said. The Jeffords bill itself "gives short shrift to what APA thinks is most important-patient control."
On April 14 APA initiated a joint meeting with the American Medical Association in an effort to promote a response to pending legislation that limits patient control of medical information. During the meeting lobbyists from both associations briefed 25 medical specialty societies on confidentiality and the Jeffords bill. According to those who attended, the discussion that followed showed that participants from both associations had similar concerns with the lack of patient protection in the bill.
APA's concerns with the PIN Act center on Section 202, which requires that employers and providers offering a health plan obtain a signed authorization from each adult the plan covers. Section 202 says that the signed, written authorization "is a legal, informed authorization concerning the use and disclosure of protected health information for treatment, payment, and health care operations." The bill contains no requirement that data be "de-identified" when used for these purposes.
Under the terms of the bill, patients can revoke consent, but health care plans are free to terminate those patients' enrollment. Ultimately, the legislation leaves patients with little effective recourse for limiting use and disclosure of their records by health plans and employers.
APA holds that patients should be protected from termination and that data about them should be de-identified. The association would like legislation to require that employers and health plans clearly notify patients about their rights and about how medical information will be used.
In addition, APA is communicating to Congress a need to clarify and strengthen the wording of pharmacy and law-enforcement provisions designed to prevent pharmacy disclosures and to insure that the only exceptions to the probable cause requirement are the small number of state or federal laws that specifically require disclosures of medical records information (such as the mandatory reporting of gunshot wounds or child abuse). Finally, additional due process protections, such as a prohibition on using evidence gathered during a medical records search against third parties whose possible wrongdoing is unrelated to the issue being investigated, are needed.
On the positive side, the legislation does not preempt state mental health and public health (including AIDS) laws or psychotherapy privileges (such as those established under Jaffee v. Redmond). States would be free to enact laws more protective of privacy in these two areas. The legislation also provides for strong penalties against the most flagrant disclosures of medical records such as those by the employee or computer hacker who sells records to malpractice attorneys or sends them to newspapers.
Still, "this is a very problematic bill that would be destructive to doctor-patient relationships," said Denise Nagel, M.D., chair of APA's Committee on Confidentiality and executive director of the National Coalition for Patient Rights. "Jeffords is pushing for early markup, and that's going to require some grass-roots response as well as an organized medical response."
"If psychiatrists care about confidentiality," said Appelbaum, "this is the time to do something about it, because when Congress acts, it will impact not only federal programs, but by virtue of the fact that federal law will override state law, it will essentially override state legislation and court rulings protecting confidentiality that we've fought for for so many years."