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Attorney Lawrence Gostin, a professor at Georgetown University Law Center, believes that while patients are entitled to some degree of privacy protection for their medical records, their claims are "not absolute" and will in some cases have to be sacrificed for the good of society.
In setting this delicate balance, Gostin, who is a bioethicist© and former social worker, places the fulcrum between privacy protection and societal benefits much closer to the side of the collective good than APA believes is reasonable. But, you might wonder, why should psychiatrists and the rest of America be concerned about Gostin's take on medical privacy issues?
It turns out that where Gostin comes down on these issues is particularly crucial because he chairs the Task Force on Health Information Privacy of the Centers for Disease Control and Prevention (CDC) and the Carter Center in Atlanta, which is charged with writing a model bill on confidentiality standards for medical records. He is also the author of the British Mental Health Act.
Speaking to a joint meeting of APA's Council on Psychiatry and Law and its Commission on Judicial Action on September 11, Gostin acknowledged that "there are substantial privacy problems that need to be fixed," but maintained that the solution that patients retain "complete control over their medical data" is not adequate.
To pursue such a course, he said, would mean that the country would have to sacrifice the clinical benefits that would accrue to society in general from having these data available. The damage to health care fraud prevention, cost savings, clinical research, public health and epidemiologic investigations, utilization reviews, and consumer education efforts would also be too devastating to permit patients to have the ultimate say over the release of their medical records, he suggested.
"We have to draw a clear circle around appropriate uses of information necessary to derive clinical and public health benefits," Gostin said, and in this circle must be the ability for "appropriate parties" to share this information. He advocates strong penalties for those who access or share medical record data outside the territory prescribed by the circle.
One problem with which he has just begun to grapple, he said at the joint meeting in Washington, D.C., is whether "there is any specialness or uniqueness of mental health data" that might force a rethinking of its place within the circle. Many in the mental health field, he noted, insist that this area needs to be treated differently from other types of medical record information. The same case is being made for data on genetics, AIDS and HIV infection, and drug abuse treatment, he added.
"The mental health claims do seem to be more powerful than the others," Gostin admitted. Mental illness treatment still relies on the strength of the therapist-patient relationship, patients have "expectations of absolute privacy" when they reveal personal information to a therapist, and these data "do tend to be more sensitive than those in other areas and the harm of disclosure greater," he said in explaining why the field may merit special confidentiality protections.
Gostin was questioned by psychiatrists Jeffrey Janofsky, M.D., of the Council on Psychiatry and Law, about how physicians and patients will know when medical record data are being "sacrificed more for the fiduciary duties companies have to stockholders" than in the cause of advancing the public good. Gostin acknowledged, "It's a legitimate worry. I don't have a good answer." He was unwilling to say that under the system he is proposing, all uses of data will be for the public good.
The model legislation he is developing for the CDC and the Carter Center will not call for absolute patient control over medical records, but will strive to give patients "reasonable assurance" that people who are granted access to those records will "treat the data with respect" and that their medical history will only be revealed when carefully detailed standards are met.
Acritical part of the debate over standards for medical record sharing is the assignment of patient identifiers that will, in all likelihood, be based in some way on Social Security numbers. Jennifer Katze, M.D., Area 3 representative to the APA Committee on Confidentiality, raised serious concerns about privacy invasions that will be made easier by the existence of the identifier. In reply, Gostin emphasized his belief that when you "ratchet up" privacy protections too much, you lose some of the overriding benefit of contributing to the public good. In contrast, he added, when protections are too lax, "you sacrifice legitimate data protections." There is "no perfect solution," he stated.
Under the system he favors, the number of authorized users of medical data "would shrink very substantially," he assured the psychiatrists at the meeting, and privacy would be improved because strict penalties would be imposed on unauthorized users, and a comprehensive security system would be put in place.
The unfortunate but inevitable consequence of the plan Gostin is advocating is that reports of unauthorized uses of medical databases will "cause some portion of the population to avoid medical care, with an eventual increase in morbidity," insisted APA Secretary Paul Appelbaum, M.D., a past chair of both the council and the commission. For psychiatrists in particular, he added, it will likely mean that patients will withhold information that could be crucial to the success of their treatment.
Gostin responded that he did not want to give the impression that he is "unsympathetic" to privacy concerns and is in fact trying to improve the situation. He reiterated, however, that he does not think that individual privacy concerns should automatically be given preference over the "collective good." He said that he hoped APA would not take an "absolutist" position on these issues, but would enter the debate on devising "a fair way to deal with valid uses" of medical record information.
If psychiatrists and the American public have strong ideas about the limits on privacy, they need to convey this to their Congressional representatives so the end result will be "a good federal statute. . .that provides reasonable privacy and that convinces people they're being treated fairly," Gostin said.