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With Congress facing a potentially contentious debate on security and privacy of medical records in its next session, the topic of the 13th Annual Rosalynn Carter Symposium on Mental Health Policy - "Privacy and Confidentiality and the Appropriate Use of Mental Health Information in an Era of Managed Care" - was especially timely.
Explaining the crucial nature of these issues during her speech at the symposium’s opening session November 19 at the Carter Center in Atlanta, Rosalynn Carter noted, "The phenomenal growth of the computer and telecommunications industries has heightened our awareness of the ease with which information transfer occurs in this society."
She acknowledged that these advances have certainly enhanced everyday life for most Americans, but warned that "there is also a growing concern about the price that we may pay for this convenience. Whether it involves banking by telephone or ordering goods and services by fax machine, the reality is that more and more people have access to our personal information," she said. But technological advances have outpaced the ability to do a satisfactory job of regulating this access.
It is, however, in the realm that we consider among the most private of all - our personal health records - that we approach the issues of privacy and security with "fear and trepidation," Carter said.
Health and Human Services Secretary Donna Shalala, facing a Congressional deadline for policy recommendations on security of medical records, jumped into the fray in September when she issued the Clinton Administration’s suggestions for guarding medical record privacy. Psychiatrists, other physicians, mental health professionals, and privacy advocates have expressed serious reservations about the Administration’s recommendations, maintaining that they would make this personal information far too accessible to people with no legitimate reason to be reading it. They argue that the wishes of the insurance industry and particularly the law enforcement community were paid too much heed by Shalala’s advisers (Psychiatric News, August 15, 1997; October 3, 1997).
At the Carter Center symposium, psychiatrist Marcia Kraft Goin, M.D., who presented an analysis of the relationship between clinical treatment issues and medical record privacy, emphasized that in the view of the parties with the most at stake, the battle lines are clear and inflexible. Third-party payers and their contracted managers insist that "unhindered access to any and all sources of information related to a patient’s health is necessary" if they are to fulfill their mission to keep costs down. Physicians and patient-rights advocates maintain, however, that all but the most basic medical record data must remain confidential to foster the relationship of trust required for optimal patient care. Besides, they argue, U.S. courts have repeatedly upheld patients’ rights to have their mental health treatment records kept out of court proceedings, Goin pointed out.
Goin, a clinical professor of psychiatry at the University of Southern California Medical School and a member of the APA Board of Trustees, explained that patients who come to physicians and "pour out their hearts [and] life stories" not only expect the sensitive information will be kept confidential but also provide the clinician with the details needed to "make an informed diagnosis and treatment plan." It is only in times of crisis that patients are likely to "drop their natural reserve and answer any and all questions, seeking relief from their pain and suffering," she said. Deprive them of the opportunity to discuss such matters when they are vulnerable, and clinicians will confront patients’ traditional inhibitions and constraints, making therapy far less successful.
Goin also stressed for the symposium participants how shortsighted it is to underestimate the impact of stigma when deciding how much of a psychiatric patient’s medical record should be open to insurers and other third parties.
Among several examples of the critical importance patients attach to privacy of mental illness treatment, Goin described the case of Todd, a 46-year-old pharmaceutical company executive who became depressed after a three-year extramarital affair ended. He was especially concerned that his doctor guard his privacy because the affair had been with a man, and Todd was terrified that his wife or employer would learn this if the information was accessible by his insurer. The psychiatrist told the insurer that Todd was seriously ill and needed hospitalization. The insurer first required the psychiatrist to describe the case for its managed care reviewer, but Todd would not give permission for the details to be passed on. A month after that, Todd committed suicide.
"As the abuses of medical records multiply, and the planned computerization of medical information becomes a reality, we must expect that there will be a profound impact on a public that is already reluctant to pursue mental health treatment," she warned. Goin cited a survey showing that 42 percent of nonpatient respondents would keep some information secret during psychotherapy if they thought that communications with their therapist were not absolutely protected.
A daunting challenge facing both caregivers and patients is the prospect that in the near future all medical records will be computerized and thus vulnerable to unauthorized disclosure, she said.
Goin urged several recommendations for any legislation governing patient confidentiality, including provisions for mental health clinicians to give information to insurers separate from the medical chart so that the most sensitive information would be protected. She strongly emphasized as well that "informed consent must not be allowed to die. It has had a difficult life," she said, but its importance has not diminished.
Among the recommendations the symposium participants agreed on was that with the stakes as steep as they are for patients, the federal government needs to slow down the process of moving to a "uniform health identifier" for all medical records. The Carter participants called for "broad-based public participation" in decision making about a uniform identifier before any recommendations go to Congress. The gains and sacrifices from such a system have been inadequately evaluated, they maintained.
They also want to see a standard consent form developed and penalties for releasing information without such consent. They rejected the notion that "a large circle of users" should have access to medical record data without obtaining patients’ informed consent. There was also a consensus against separate privacy protection standards for mental health treatment that would go beyond those for other services.
As Rosalynn Carter pointed out to the symposium participants, however, in light of the chasms that separate the interests of the various stakeholders in the privacy debate, "the reality is that there are no easy answers" to the questions of who should have access to what information from patients’ medical records, for what purposes should access be granted by law, and who should make these decisions.