Plus Ça Change, Plus C’est la Même Chose By Herbert S. Sacks, M.D. APA President

He was found by the Bureau
of Statistics to be

One against whom there was no
official complaint

Was he free? Was he happy? The
question is absurd:

Had anything been wrong, we should
certainly have heard
--W. H. Auden

You have been reminded at every turn in these columns about how over the past 20 years patient confidentiality and privacy have dramatically eroded, damaging the doctor-patient relationship and compromising treatment. The health privacy crisis has been spurred by the computerization of medical records; the establishment of linked databases containing sensitive medical information on millions of Americans; and the review of personal data, including our patient notes, by managed care companies on fishing expeditions using blanket authorizations that constitute uninformed consent. Unless patients can be confident that the information they give to us is confidential, they may hold back important information, compromising the treatment and underscoring not just their distrust of the reimbursement system but also of the doctor.

Secretary Shalala’s proposed solutions to the privacy crisis are deeply flawed, dangerously defective, and a breathtaking assault on the sanctity of medical records. Articles in Psychiatric News have resonated with arguments demonstrating how the proposal cripples the principle of informed consent and jeopardizes the quality of health care. Further, the Secretary’s proposal is in contradistinction to Jaffee v. Redmond, the 1996 landmark decision recognizing that "the mere possibility of disclosure of confidential communications may impede the development of the relationship necessary for effective treatment" of mental disorders. The Secretary’s proposal expands law enforcement and intelligence agency access to medical records by a door knock, without subpoenas, search warrants, notice, or limits on redisclosure.

APA has battled vigorously against these developments on Capitol Hill, in the media, and through the participation of our leaders on major national health policy committees.

The AMA has been a forceful ally, consulting with APA and testifying before the Senate and the House within the past few months arguing for the protection of patients’ confidential communications and informed consent. At the AMA interim meeting in Dallas last month, APA and the American Academy of Child and Adolescent Psychiatry introduced Resolution 204 to affirm seven principles in AMA lobbying before the Congress. These principles include

• the patient’s right to privacy and informed consent,



• limitations of insurers’ and managed care entities’ information demands beyond the minimum necessary for a covered diagnosis,



• informed consent covering information transfer inclusive of computerized databases,
  
  
• requiring any future federal legislation to set a floor for privacy protections and not preempt federal or state law or regulation that provides greater medical records protection, and
  
  
• no imposition of unneeded barriers for research undertakings that protect individuals.

The resolution gained widespread approval and was referred to the AMA Board of Trustees for further consideration.

The Carter Center last month, at its 13th Annual Rosalynn Carter Symposium on Mental Health Policy, sponsored a program titled "Privacy and Confidentiality and the Appropriate Use of Mental Health Information in an Era of Managed Care." APA is proud that prominent colleagues, extraordinarily knowledgeable about the issues, presented papers (Dr. Marcia Goin) or were discussants of papers (Drs. Richard Harding, Steven Sharfstein, and Ray Patterson). Participating in the work groups were, along with me, Drs. Steven Mirin, Renato Alarcon, Joseph Bono, Paul Fink, George Harding, Steven Levy, Don Lipsitt, David Pruitt, Charles Nemeroff, Barry Landau, Alex Weintrob, Farrell Brazial, Denise Nagel, Otto Wahl, and Bernard Arons. APA staff Robert Trachtenberg, Jay Cutler, and William Bruno were active contributors.

I cited our APA participants to emphasize our respected presence at this policymaking meeting. The Carter Center, in the words of Mrs. Carter, has as its ethos consensus building and reasonableness. This guideline avoided argumentation that might have illuminated complex issues, such as clearly substantiating the role of managed care in lacerating confidentiality and making a mockery of informed consent. When I raised this issue at a general meeting during a question-and-answer session, I invited a bristling attack by an executive of the American Managed Behavioral Healthcare Association. His attack did not go unanswered. The meeting’s product will be published and distributed to legislators, policymakers, and think tanks.

Many of the presentations were of high quality, but the wide range of invitees representing professional and advocacy groups reflected different levels of sophistication, which often limited progress in the workshop discussions. While revisiting confidentiality issues is always valuable, I was troubled by the failure of the conveners to recognize the remarkable and prescient conferences on the subject more than 20 years ago. In 1974 50 diverse medical and patient advocacy groups sponsored the Conference on Confidentiality of Health Records in Key Biscayne, Fla. At that conference, with 140 participants, I represented the American Academy of Child and Adolescent Psychiatry. Senator Sam Ervin Jr. reminded us that we were brought together by "two powerful trends. One was the dynamic growth of computer technology—the increased feeding of personal information into data-gathering machines; the other, the increased involvement of government, especially the federal government, in health matters." Senator Ervin worried that data banks containing personal information, instantly retrievable, would betray citizens for the rest of their lives.

Senator Ervin praised the concern of APA’s 22,000 psychiatrists (1974!) and spoke of his education about mental illness by his brother-in-law, Dr. James King Hall of Richmond, Va., a former president of APA.

That groundbreaking meeting was followed up by the National Conference on the Health Records Dilemma in 1977, sponsored by the National Commission on the Confidentiality of the Health Record, chaired by Dr. Alfred Freedman, an APA past president. I am proud to have served on its executive committee throughout its tenure.

The two conferences, three years apart, addressed what constitutes an adequate health record, Alan Westin’s zonal concepts, sharing the record, quality assurance, informed consent, government intrusions, who controls the record, third-party payers, employee health records, epidemiologic research, data banks, and the role and obligations of government and the private sector.

Despite the massive growth of information systems that began 20 years ago, there was no issue examined at the Carter Center that had not been explored at these two conferences! Plus ça change, plus c’est la même chose.

I reminded Robert Gellman, chair of the National Committee on Health and Vital Statistics at the Department of Health and Human Services, of the 1970’s meetings. (The committee, established by the Kassebaum-Kennedy legislation, is charged with making privacy recommendations to the secretary of HHS [Psychiatric News, December 20, 1996].) He had only begun to be interested in confidentiality in the late 70’s and today uses Professor Westin’s zonal concepts in elaborating his own ideas.

I still possess a small collection of the 70’s conference reports and will turn copies over to Jay Cutler and Will Bruno of APA’s Division of Government Relations, Dr. Richard Harding, who sits on the National Health and Vital Statistics Committee, and Dr. Denise Nagel, chair of APA’s Committee on Confidentiality, so we can integrate those historic findings into our present campaign to protect our patients.