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On September 11 Donna Shalala, Secretary of the Department of Health and Human Services, suggested to media representatives that Americans will welcome the prospect of new federal legislation to protect medical privacy. That’s far from the truth - at least not once the public understands that they will be entering a brave new world of medical record access if the proposed standards, euphemistically titled Ensuring Confidentiality of Health Information, become law. APA President Herbert Sacks accurately called this proposal "a giant leap backward" (Psychiatric News, October 3).
What will happen is that the doctor-patient relationship will be shattered and most Americans will have lost their long-cherished medical privacy.
The recommendations radically broaden the scope of public access to medical records without patient consent. Federal health officials have deemed patient consent impractical in this age of fragmented medical care and computerized payment systems.
The civil liberty of privacy has been sacrificed to the need for "administrative simplification" as legislated in the 1996 Federal Health Insurance Portability and Accountability Act. Businesses, bureaucrats, private investigators, researchers, law enforcement agencies, and the vast information industry have reason to cheer.
Citizens, however, should weep, or better yet, protest loud and clear to Congress before it is too late - an action that APA modeled for us in President Sacks’s testimony to the Senate Labor and Human Resources Committee, in which he blasted this proposal. An APA delegation including Sacks, former medical director Melvin Sabshin, and Trustees Paul Appelbaum and Marcia Goin also explained APA’s concerns in recent meetings with White House health advisers. What we will lose is too precious to let it disappear quietly.
Instances in which DHHS recommends release of medical records without patient authorization include the following shockingly broad categories: oversight of the health care system, including audits, investigations, quality assurance, and licensing of health professionals; research studies; states for their data systems; a wide range of law enforcement investigations; and court proceedings in which the patient is a party. There is no requirement that patient-identifying data be deleted before records are passed along.
Medical records will in effect become public documents, with great potential for misuse and the inevitable destruction of the trust a confidential doctor-patient relationship requires. In addition, such open access will serve as the backbone for the creation of a national nonconsensual medical database.
A September 15 New York Times article titled "High-Tech Sleuths Find Private Facts Online" pointed out the wealth of commercial databases unknown to most citizens that are quickly forming a global investigational industry. Personal information has become a lucrative commodity.
The article notes, "Cash-strapped governments are selling digitized public records to a new generation of commercial database companies [that]. . .collect such data. . .and use powerful new software to mix and match scattered bits of information." The information that commands the most money is medical - data that until recently were relatively inaccessible. But the DHHS recommendations would change that, in spite of fines and guidelines intended to prevent misuse. The more personal medical information is released and dispersed, the more it will be misused, legally or not.
The tragic error inherent in these medical record access recommendations is that, according to DHHS, "privacy protections must be balanced with the public responsibility to support national priorities - like public health, research, quality care, and our fight against health care fraud and abuse." Absolutely not! Privacy and confidentiality should be sacrosanct, civil rights that are inviolate except in the most restricted cases of physical dangerousness.
Privacy is not a thing to be traded off and "balanced." Rather, given the right and necessity of privacy, we must seek better strategies for achieving valid and laudable national health information goals without sacrificing privacy. DHHS has failed to regard privacy as necessary for a healthy democracy. One thing common to tyrannical and oppressive governments worldwide is the absence of individual privacy.
When Secretary Shalala made her statement to the press, her "privacy" recommendations were reported as steps to enhance confidentiality, and that may be sadly true in states that have no confidentiality "floor" legislation. If Shalala’s recommendations are enacted, these deficient states would at least have such a floor, permeable as it may be. States with more restrictive confidentiality laws or those prodded to enact them in the future can still enforce their stronger laws, which may become our only rescue from the privacy devastation of the federal proposals.
But a far better plan is enacting protective, citizen-friendly federal confidentiality legislation, as Senator Patrick Leahy (D-Vt.) has been promising for months. We must encourage him, perhaps through our own state Senators and Representatives, to introduce that alternative legislation soon. We also must participate in the Privacy Petition Drive sponsored by the Coalition for Patients Rights, which is designed to convince lawmakers that the public is deeply troubled by proposals to reduce patients’ control over their medical records. Its phone number is (888) 44-PRIVACY.
Privacy is like Pandora’s box - once it’s opened, there’s no returning to the way things were. Our patients have the right to keep "medical secrets," and if they can’t, not only will our work as psychiatrists be destroyed, but we all will have lost a precious civil liberty.
Dr. Katze is in private practice in Baltimore and is a member of the APA Committee on Confidentiality.