Bioterrorism, Public Health and the Law 
Law 801: Health Care Law Seminar
Professor Vernellia R. Randall

Public Health Protection and Privacy of Medical Records

 

Syllabus
Resources
Lesson Schedule
00: Intro to the Course
01: Intro to the Problem
02: Public Health System
03: Real Threat?
04: Public Health Law
05: Disease-Reporting
06: Quarantine
07: Model Act
08: Military Presence
09: Health Law Revisited

 

Wendy E. Parmet

Excerpted from: Wendy E. Parmet, Public Health Protection and the Privacy of Medical Records, 16 Harvard Civil Rights-Civil Liberties Law Review 265-304 (Summer, 1981) (171 Footnotes)

  Today there is a sharp tension "between society's interest in protecting medical confidentiality and its legitimate need for access to medical records." The institutionalization of programs to provide health care and the increased mobility of modern life have forced physicians to include more information in medical records so that other practitioners will be aware of prior diagnoses and treatments. Additionally, the recognition of the relevance of emotional factors to the treatment of all illnesses has increased the sensitivity of the information stored in medical records; they can be as sensitive as psychiatric records.

  The increased complexity and institutionalization of health care programs has also meant that medical records are used for purposes not directly related to the treatment of patients. Since health care is now largely financed by private or public insurers, records are used to substantiate claims. Furthermore, records provide both scientific and fiscal information necessary for technological and structural innovations in health care. Improvements in data technology have made medical records easier to store and transfer, despite their proliferation. The result is that medical records are presently used in more ways and by more people than ever before .

  The law has not adequately met the threat to the confidentiality of medical records. No legal protection was seen as necessary under the common law. At that time an individual's records, if any, were maintained by the patient's family doctor and were rarely disclosed. The statutory physician- patient privilege, first enacted in the nineteenth century, only protects medical records from disclosure during the course of litigation. The privilege does not shield the vast amount of information which is now revealed either casually or through administrative processes. Several recent court decisions have recognized a limited privacy right that attaches to medical records, but no court has clearly delineated the bounds of that right, nor has Congress accommodated the tension between society's need for medical records and a patient's privacy interests.

  In the past, two broad rationales supported the confidentiality of medical records: privacy and public health. The privacy rationale rested upon an ethical judgment about the nature of human dignity which allows the individual to control the disclosure of certain personal information, and to make certain kinds of decisions about his or her life independent of state interference. The public health rationale was based on a utilitarian calculation that the confidentiality of medical records promotes public health because patients will not seek medical treatment unless they are assured that what physicians learn about them will not be disclosed.

  Today, however, concerns for public health often favor the disclosure of medical records. Therefore, the concerns for privacy and public health reflect the tension within society itself between protection of an individual's privacy and the public's need for disclosure. . . .

I. Two Rationales for Upholding the Confidentiality of Medical Records

A. The Privacy Rationale

  The privacy rationale has long been endorsed by the medical profession's own code of ethics. In recent years, courts have recognized and endorsed the privacy rationale. The modern ethical basis for protecting privacy has been defined in many ways, but the law has used the term to denote two central interests: the individual's ability to control the disclosure of certain personal information, and the individual's ability to make certain kinds of important decisions about his or her own life independent of societal pressure. The individual's ability to control disclosure is never absolute. An individual cannot live in society without others knowing something about her, nor can she possibly control all the information that others obtain. In the case of medical treatment, for example, a patient may wish to limit her disclosures to the doctor to what is absolutely necessary for a specific treatment. Since the doctor will inevitably discover more than the patient would knowingly reveal, the patient could never be totally successful in limiting the doctor's knowledge.

  The interest in non-disclosure does not lose its importance merely because it cannot be fully accommodated. Relative control over the disclosure of personal matters is a vital condition for the realization of many widely held values. Control over disclosure has been claimed to be a prerequisite for the formation of human relationships, the ability to escape societal prejudices and stigmatizations, and even the ability to participate in a democratic polity.

  These justifications for non-disclosure have an important central vision; they view the individual's control over disclosure as a way of mediating the conflict between autonomy and community. The justifications recognize and value the need for individuals to be different, yet accept the need for a society although it circumscribes the uniqueness of individuals. By controlling the disclosure of personal matters an individual can be a member of society while maintaining his or her individuality.

   Recent court decisions have shown an increasing sensitivity to the interests of non-disclosure. For example, in Katz v. United States the Supreme Court held that the fourth amendment protected an individual's reasonable expectation of privacy. Developments in tort law have made physicians liable for breaching confidentiality in medical records. The plurality opinion in Singleton v. Wulff, which upheld a physician's ability to obtain standing on behalf of a patient, implicitly recognized a patient's interest in protecting the confidentiality of medical records. The extension of standing to the physician enabled her to come forward publicly and assert the patient's cause of action while the patient remained anonymous.

  The ability to make personal decisions is less directly related to medical records disclosure. It is important, however, because the law has used this privacy interest to delimit certain areas of individual decision making where the individual is free to make a decision without state interference, such as contraception, abortion, and religious and political beliefs. In these areas, disclosure threatens the individual's ability to make decisions. In NAACP v. Alabama ex rel. Patterson, the Court held that disclosure of the Alabama membership lists of the NAACP threatened to inhibit the members' freedom of association. Similarly, in Planned Parenthood of Missouri v. Danforth, the Court recognized the inhibiting effect that extensive record-keeping could have upon a woman's right to have an abortion. The Court concluded that records could be kept, but only if they were "reasonably directed to the preservation of maternal health and properly respects a patient's confidentiality and privacy . . . ."

  Drake v. Covington Board of Education is another example of how disclosures threaten individual choice. In Drake, an unmarried public school teacher was dismissed when the school board learned from her physician that she was pregnant. A three-judge district court determined that her dismissal, without any evidence regarding incompetency, constituted an invasion of her constitutional right of privacy. The disclosure of Drake's medical records had led to an abridgement of her fourteenth amendment rights.

  The Supreme Court has recognized both types of privacy interests--the interest of non-disclosure, and the ability to make personal decisions--in the medical area. Doe v. Bolton emphasized the confidential nature of the physician-patient relationship while affirming that the decision to perform an abortion was one that primarily must be left to the physician and the patient. The privacy interest attaching to medical records themselves was at least noted and considered in the Court's decision in Whalen v. Roe. The Court in Whalen unanimously upheld a New York law which required a central computer recording of the names and addresses of all persons who obtained prescriptions of certain easily abused drugs. Justice Stevens, speaking for the Court, discussed the interests in non-disclosure and personal decision making and left open the possibility that these privacy interests might take on constitutional proportions.

  Congress has also recognized the privacy rationale and implemented it in numerous pieces of legislation. In the Privacy Act of 1974 Congress declared that "the privacy of an individual is directly affected by the collection, maintenance, use and dissemination of personal information. . .," and that "the right to privacy is a personal and fundamental right protected by the Constitution of the United States. . . ." In at least two areas, financial and newspaper records, Congress has gone beyond the judiciary and has enacted legislation to protect privacy.

  Congress has also specifically recognized the privacy interests attaching to medical records. Title II of the Privacy Protection Act of 1980 authorizes the Attorney General to establish guidelines for federal officers obtaining documents held by third parties. These guidelines safeguard privacy interests in a "confidential relationship such as that which may exist between a . . . doctor andpatient." More comprehensive but still incomplee protection for medical records privacy was proposed in the various bills introduced in the 96th Congress. H.R. 5935 exemplified the intention of those bills by terming the right to privacy a constitutionally protected fundamental right which can be threatened by "the collection, maintenance, use and dissemination of medical information." None of the bills, however, passed either house of Congress.

B. The Pro-Public Health Rationale

  The public health rationale has been the historically dominant justification for the majority of already existing confidentiality safeguards. In the nineteenth century this rationale appeared to be reasonably consistent with the existing institutional structure of health care delivery in which the major means of improving health care delivery was treatment by an individualphysician. The rationale was also consistent with laissez- faire conceptions of the public good, and the relationship between public and private powers. Under this view, the only way to achieve the public good was to support freely chosen individual relationships. The state could best improve the public health by facilitating and promoting physician-patient relationships that would improve each individual's health. If medical record confidentiality protects the individual physician-patient relationship, confidentiality can be justified for instrumental reasons without relying on any ethical conceptions of privacy.

  The physician-patient evidentiary privilege, the law's first protection for medical records confidentiality, embodied the public health rationale. The original justification of the privilege was not the private nature of the communications between a patient and a physician, but rather the belief that, without the privilege, patients would be discouraged from seeking treatment. An 1836 report from the Commission on Revision of the Statutes of New York, reviewing the first evidentiary privilege statute stated:

    [U]nless such consultations are privileged, men will be incidentially punished by being obliged to suffer the consequences of injuries without relief from the medical art, and without conviction of any offense. Besides, in such cases, during the struggle between legal duty on the one hand, and professional on the other, the latter aided by a strong sense of the injustice and inhumanity of the rule, will in most cases, furnish a temptation to the perversion or concealment of truth . . . .

  The promotion of public health therefore justified the enactment of the privilege. In addition, the cost of the privilege, measured in terms of the concealment of truth, was thought to be minimal since physicians were unlikely to testify against their patients in any event.

  The justification for promoting care by promising to keep medical information confidential is also illustrated by the special privileges given to records resulting from mandatory medical examinations for certain communicable illnesses, such as venereal disease. Here, the guarantee of the privilege seeks to prevent people from evading laws that otherwise would be almost impossible to enforce. In such cases the public health rationale harmonizes with privacy concerns aroused by the sensitive nature of such treatments.

  Since the justification for the evidentiary privilege is to induce people to seek medical care, it is not surprising that the privilege is usually maintained in all situations which would otherwise lessen "the patient's freedom from apprehension of disclosure." The privilege is usually maintained even after the patient is dead, the reason being that fear of posthumous disclosure would deter living patients from seeking medical care. The privilege is typically waived when a patient sues a doctor or raises his mental health as an issue. Although such waiver theories may justify disclosure even when a court is influenced by the privacy rationale, sensitivity to privacy considerations would demand that a court be more careful when implying a waiver, especially when the party is deemed to have waived privacy rights only by acting to protect other legally protected rights.

   The most interesting aspect of the public health rationale is not how often it has undermined confidentiality, but rather its own empirical vulnerability. As Wigmore noted, it is a very questionable assertion that people would not seek medical treatment if their medical records were not confidential. Under the pressures of pain and mental anguish, most people probably would opt to suffer the embarrassment, stigmatization, and perhaps legal liability that could follow from the disclosure of their medical records.

  Even if the confidentiality of medical records does to some degree encourage treatment, it is unclear whether it will always promote the public health more than disclosure would. Recent changes in the delivery of health care have undermined the premises underlying the public health rationale for medical record confidentiality. As of 1976, for example, physicians provided less than five percent of the health care services in America. Instead, medical care today is provided by a host of professionals including nurse practitioners, physician assistants, dentists, optometrists, and psychiatric social workers. Moreover, care is delivered in private offices, hospitals, clinics, and nursing homes. As of 1975, two-thirds of these services were paid for by either private or public third-party insurers who have increasingly begun to regulate and monitor the services they finance.

   Political conceptions about public health care have also changed. People now look to the government to do more for public health than merely facilitate private transactions. Governmental insurance programs, health and safety regulations, and public support for medical research are a few examples of the new roles that government plays in health care. This increased governmental participation in health care has all but destroyed the basic premise of a doctor-patient relationship present in the public health rationale. In fact, these changes could be seen as justifying the abolition of medical records confidentiality since the disclosure of medical records often enhances the efficient pursuit of the new goals. Today's health care may be more improved by detecting and eradicating environmental hazards than by promoting individual trust in physicians. The detection of environmental hazards may be further facilitated by epidemiological studies of medical records. Thus the promotion of public health would not justify the non-disclosure of medical records to epidemiologists. Likewise, if anyone elects to receive medical care from governmental aid programs or third-party insurance programs despite the knowledge that such support will lessen the confidentiality of their medical records, then the promotion of public health goals will not justify protecting the confidentiality of program beneficiaries.

  To some extent, the use of non-identifiable records could satisfy the informational needs of these public health programs. But the process of coding and abstracting records will often be costly and the non-identifiable records will often be less useful for accomplishing the goal their use was meant to promote. Moreover, in terms of treatment inhibition, the utilitarian cost of record disclosures is uncertain and less compelling today than in the past. Patients in modern health care institutions are accustomed to consenting to a wide variety of disclosures. Consequently, except when there is an unusually sensitive diagnosis, such as venereal disease, the reluctance of patients to come in for medical treatment probably does not equal the costs to the public health of the denial of identifiable disclosures. The validity of the purely utilitarian rationale that lay behind the evidentiary privilege is now highly questionable. As a consequence, utilitarian and privacy concerns now conflict in most cases, leaving us to seek a way to reconcile the competing interests.

II. Health Care Related Disclosures

  The virtual collapse of the public health rationale for medical records confidentiality necessitates a reappraisal of the interests in health care and the construction of a framework which can accommodate those interests. Public health improvement must be promoted while simultaneously respecting privacy interests.

  It is impossible to schematize all of the uses of medical records. Nevertheless, five broad types of use, or "use spheres," can be noted. The first four concern health care related disclosures, or primary disclosures, and will be discussed in this section. The fifth sphere, secondary disclosures, is discussed in Part III. Of course, any one individual or institution can operate in more than one sphere. The typology is not institutional, it is purely functional.

A. The Medical Treatment Sphere

  Health care delivery is the first "use sphere." In this sphere medical records are created and used to facilitate the treatment of an indiual. The record user can be a single physician or a large public hospital, and one or dozens of individuals may have access to the records. Nevertheless, the patient's treatment is the reason for the creation and use of the records.

  The medical treatment sphere is the one sphere in which record keeping and use is legitimate. By definition, the public health interest favors disclosure within this sphere since such disclosures facilitate treatment. Second, the patient has some control over the information which is disclosed. This control may be limited, since the patient may be under severe stress and may therefore disclose more than he or she would otherwise. The physician may also learn more than the patient intended to disclose. Still, the information is recorded primarily to facilitate treatment. The patient normally approves of this goal and thus either explicitly or implicitly authorizes the record user to use the records for that purpose. Furthermore, as long as record- keeping remains in this professional atmosphere, dangers of stigmatization, misuse of information, and inhibition of patient autonomy are limited by professional ethics. Within the medical treatment sphere, the harm to privacy interests caused by disclosures is far less than the harm to the patient's and the public's health that would be caused by prohibiting disclosures.

B. Health Care Evaluation and the Support System

  Health care evaluation and support ("the support system") is the second category of use spheres. This broad area includes third-party insurers, professional certifiers and auditors, and government program inspectors. Again, the public health goals favor disclosure, as disclosure makes claims processing and quality reviewing cheaper and more effective.

  However the privacy interests here are more compelling than in the health care delivery sphere. The support system's use of records goes beyond the physician-patient relationship. Information is often disclosed without the patient's knowledge and the presumption that the patient would approve of such disclosures is weak. Furthermore, such disclosures are often made to parties other than health care professionals. Disclosures increase the chance of stigmatization and societal disapproval of the patient, causing a corresponding loss of autonomy. The harm caused by a lack of privacy appears most alarmingly in psychiatry, in which studies have shown that many patients do not request insurance benefits to which they are entitled merely because they fear the loss of control over their record disclosures.

   To a large degree the privacy threat caused by the support system's use of medical records is unnecessary. Some of this sphere's needs for medical records could be met by using non-identifiable records. Certain types of auditing and evaluating could be done by using coded or abstracted records, as is now required for medical records generated under some programs. The American Medical Association's Commission on Professional and Hospital Activities believes that the massive reporting of records now required by auditing programs is unnecessary and audits of abstracted records could be substituted. As an expert in the field of medical records confidentially has noted, both Britain and France manage to conduct their audits and evaluations without the broad use of identifiable data which prevails in this country.

  One situation in which personal data is disclosed needlessly is an experimental peer review program for the evaluation of outpatient psychiatric claims. The program is designed to provide means for reviewing psychiatric cases in order to facilitate insurance coverage for all legitimate claims. "Suspicious claims" are sent to a participating psychiatrist for a peer review. The records used in this review include the patient's name and other identifyinginformation. There is no reason why the records could not be sent to the reviewer with only a code number attached by the insurer.

  In many cases the information which identifies the patient would seem necessary for the achievement of support system goals. Third-party insurers need to see some description of the treatment and diagnoses given to their beneficiaries, and auditors will often have to look at the original records as well as abstracted data prepared by a health care provider. The cost of medical care is already so high that the government, private insurers, and the economy cannot accept without question a professional's description of services rendered. Without mechanisms for preventing excessive fees and poor services, not only will our dollars buy less health care, but negative public reaction may reduce support for health care services altogether. The public health interest favors at least some identifiable disclosures to the support system.

  The interests supporting disclosure outweigh the privacy interests infringed upon by disclosures within the support system. The majority of cases, in which a record is audited or a claim processed by an anonymous clerk who has no interest in any particular patient, pose a relatively minor threat to individual privacy interests. The individual's privacy is protected by the impersonality of the process. If the support system employee is unconcerned about the particular patient or cannot remember the information, then the patient suffers no threat of stigmatization or other forms of social reproach.

C. The Research Sphere

  Scientific research is the third sphere of use. This sphere possesses many of the characteristics found in the previous spheres--the users are primarily professionals, the patient is usually unknown, and his or her identity is not a particular concern of the record user. Furthermore, some of the need for medical records can be met by using non-identifiable records.

  The public health rationale justifies researchers having access to records. While most research can be done prospectively with the researcher obtaining informed consent from the patient, much epidemiological research requires a retrospective analysis of records. The danger of DES, for example, was determined through such studies. Since knowledge of the study may affect the behavior of both patients and clinicians, obtaining patient consent may destroy the scientific validity of the study.

  Once the researcher contacts the patient and comes to know him the situation changes dramatically. A researcher's contact can deeply violate the patient's privacy. For example, one researcher went to a patient's home on a Saturday when a party was in progress. He introduced himself by saying, "Hi, I am so- and-so from such-and-such organization, and we are doing a follow-up study of patients who had been enrolled in the methadone maintenance program." But, the patient can be hurt even when the contact is private. The contact may reawaken unpleasant memories, thereby lessening the patient's ability to escape his past and change his future.

  The possibility of such privacy losses should require anincreased protection for the individual. Such contacts, therefore, should be treated like secondary disclosures, which also require additional safeguards and will be considered in Part III.

D. The Public Health Investigation Sphere

  The fourth use sphere is that of public health investigations. This sphere is closely related to the research sphere, the major differences being that records are used to detect specific health problems or violations rather than for scientific discovery, and the user is often a governmental body acting with the force of law.

  Disclosures in the context of public health investigations form a continuum between those which are prima facie justifiable and those which are not. At one extreme are disclosures in which the patient is not suspected of having caused the violation or condition under investigation. The patient is instead the intended beneficiary of the investigation's discoveries. A prime example of such a situation comes from recent OSHA regulations which require an employer who "makes, maintains, contracts for, or has access to employee exposure or medical records" to keep the records for thirty years and make them available to OSHA. In such a case, privacy would seem not to be intruded upon any more than in the research sphere. As far as the patient is concerned, the government is acting like an epidemiologist, except that the patient is more likely to be the beneficiary of the investigation since specific public violations or conditions which can harm the particular patient are the subject of investigation. Such disclosures should be permissible.

  Other types of public health investigations are made pursuant to various mandatory reporting statutes. The requirement that physicians report all cases of gunshot wounds or child abuse. arguably require disclosure which benefits the patient's interests and which the patient would consent to if he or she were able to do so. The requirement, existing in all states, that physicians report information about deaths and births, may also fall into this category.

  Other types of reporting statutes would not seem to benefit the patient's health as much as the public health in general or some other societal goal. These statutes include venereal disease reporting statutes and other sexual activity reporting statutes or drug abuse reporting statutes. considering the appropriateness of these statutes, two crucial questions must be asked: what is the real purpose of the investigation and what is the threat to privacy? As the nature of the investigation changes from one which benefits the patient to one which benefits public health, the threat to privacy increases. At some point such investigations become, from the patient's perspective, non-health care investigations. The following section discusses the problems which may be caused by such investigations.

 
 
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 11/30/2002

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