Men of Zeal: Snoops and Paparazzi By Herbert S. Sacks, M.D. APA President

On September 11 Secretary Donna Shalala presented to the Senate Labor and Human Resources Committee a 90-page legislative proposal on the privacy of medical records.

Privacy is the right to be left alone; the right of an individual to withhold himself and his property from public scrutiny. The Massachusetts Medical Society Task Force on Patient Privacy and Confidentiality reminds us that confidentiality is the right to rely on the trust or discretion of another; the right of an individual to control access to and disclosure of private information entrusted to another. While the terms privacy and confidentiality are often used interchangeably, they are not synonymous. Privacy derives from the concepts of individual freedom and autonomy and involves the ability of an individual to control the release or dissemination of information that relates to himself or herself. Confidentiality derives from a relationship when an individual gives private information to another, on the condition or with the understanding that the other will not disclose it, or will disclose it to the extent that the individual directs.

The Congress required the Secretary to develop comprehensive recommendations on medical privacy as part of the Kassebaum-Kennedy 1996 law, which made health coverage more readily accessible for millions of Americans. Under the Department of Health and Human Services, the Committee on Vital and Health Statistics released a report in late June expressing alarm over breaches in protecting patientsí medical records, but the committee recommended allowing records to be used without the patientsí consent, a dramatic retreat from historic privacy principles (Psychiatric News, August 15). The explicit reasons for this rash reversal of long-standing policy included improving the quality of health care, reducing costs, conducting research, and law enforcement imperatives. APA member Richard Harding, M.D., argued unsuccessfully that the recommendations moved the debate in an antiprivacy direction. Of the six physicians on this influential committee, Harding is the only one in private practice. The panel is heavily weighted by membership representing large institutions and health care systems, but there is no representation of patient or privacy advocacy groups. APA criticized the recommendations as acquiescing to the demands of law enforcement, insurers, and HMOís. Obviously the committeeís recommendations influenced the Secretaryís legislative proposal.

On the affirmative side, Shalalaís plan would put into place new safeguards to limit access to medical records by employees, drug manufacturers, and direct-marketing companies and establish civil and criminal penalties when the rules are violated and the records are misused. The penalties are Draconian, but convictions will be difficult to obtain in practice. Will an employee out of high school, impressed by the medical records of the rich and powerful, be able to maintain silence with family and friends? Hardly. Again, on a positive note, if state confidentiality laws set higher standards than the Administrationís proposals, the respective statesí standards would prevail over the federal statute.

Law enforcement agencies would be exempt from most of the Secretaryís standards. Under the Administrationís proposal, it would be easier for investigators to gain access to medical records than to the records of banks, cable television, video rental stores, or e-mail users, all of which are protected by federal privacy statutes. The proposal would not require law enforcement agencies to get court orders or to notify patients when they seek medical records by invading hospital record rooms; your offices; and insurance, HMO, and managed care organization data banks.

The invasion by law enforcement people, including the intelligence community, is ostensibly to be used against patients, doctors, and institutions in investigations and prosecutions. One legal observer noted that when that medical information obtained without consent is used to prosecute, it prevents that individual from exercising the Fifth Amendment right against self-incrimination. When used to prosecute the doctor, that physician has "given up" evidence for a trial without being subpoenaed.

Shalala caved in to the Department of Justiceís demands, according to an Administration official. HHS stated that under the proposal, hospitals and other health care providers have to keep logs documenting every instance in which they divulge part of a patientís medical record, with or without that patientís consent, to researchers, law enforcement, insurers, courts, or other government agencies. In theory, such logs would help auditors trace the source of an improper disclosure. Patients would be allowed to inspect the logs (!) except when such an inspection was likely to impede law enforcement. The Secretary said that patients damaged by improper disclosure should be able to file lawsuits in federal court to obtain compensation.

Breaching confidentiality and privacy through the flawed Administration proposal would severely threaten our patients and the survival of therapeutic efforts. This proposal is critical to our field, since confidentiality is the centerpiece of our work, tightly embracing the concept of informed consent. Historically, confidentiality is an ethical standard returning us to Hippocrates. One hundred and fifty years ago, when the AMA was organized, confidentiality was highlighted in its Code of Ethics. The legal foundations of confidentiality of information are found in the Constitution, various state court decisions, federal and state statutes, and English common law.

Snoopers and police paparazzi will undermine our patientsí belief that what they tell us of their life stories will be held in confidence. In pain and suffering, our patients are vulnerable. Their stories, confessions, indiscretions, and admissions of sexual and aggressive behavior provide the data to permit informed diagnoses, formulations, and treatment plans. In reviewing Jaffe v. Redmond, the U.S. Court of Appeals for the Seventh Circuit stated that "the patientís ability to communicate freely without fear of public disclosure is the key to successful therapy."

Currently, potential patients delay or avoid treatment because of privacy concerns. Stigma is still a major reason for avoiding treatment enhanced by the recognition that confidentiality breaches may occur. Economic punishment for mental illness in hiring, promotions, job security, and insurability is widely and covertly practiced. An increasing number of patients covered by insurance pay for service out of pocket to deter establishing a computerized medical record available widely through cross-linkages accessible to a 16-year-old hacker.

The Shalala proposal, while recognizing that special consideration be given the most sensitive parts of medical records, does not propose such protections. The Administration has recently backed an encryption recommendation for records, but the technology has a "trap door" to give law enforcement instant access.

When we fought against managed care inequities, HMOís and insurance companies charged us with being self-serving, using "quality of care" arguments to avoid accountability. We are developing a privacy campaign to stir up the citizenry, who will carry the banner to the Congress. This peopleís campaign in no way can be condemned as self--serving. Advocacy groups, mental health coalitions, and lobbying groups from the right and left sides of the political spectrum will be mobilized. And each district branch must found coalitions, much like the 40-member group led by Denise Nagel, M.D., in Massachusetts, to do battle on the ground.

Justice Brandeis wrote in a 1928 dissent in Olmstead v. United States: "Experience should teach us to be most on guard to protect liberty when governmentís purposes are beneficent. The greatest danger to liberty lies in the insidious encroachment of men of zeal, well meaning but without understanding."