Introduction

The orientation of the NYC MMTP regarding confidentiality of patient records was initially expressed as a broad, and in retrospect meaningless, generalization: "The Program will maintain confidentiality of patient records." This policy was considered so self-evident and unambiguous that explicit guidelines and procedures relating to confidentiality were not included in the first Policy and Procedures Manual prepared by the Program in July, 1971.

As NYC MMTP patient population grew, the frequency of demands for access to patient information grew proportionately; by 1973, when 10,000 patients were enrolled, it was not at all unusual for several subpoenas to be pending at once. In addition to having records subpoenaed, less official demands were received from an almost endless variety of sources, including the District Attorneys and the Police Department, the City Fire Marshall, the State professional licensing authority, the Federal Bureau of Investigation, the Immigration and Naturalization Service, the State Drug Abuse Control Commission, narcotics enforcement agencies at all levels of government, parole and probation officers, the Bureau of Child Welfare, Family Court, relatives and acquaintances of patients, and individuals engaged in every imaginable type of research. The one characteristic common to virtually all of the inquiries was the acknowledgment that while confidentiality, in general, was essential, in the particular case in question an exception should be made. The rationale in each instance was felt to be so compelling that the usual arguments for maintaining patient privacy did not apply: "But we're trying to capture an arsonist." "This case involves a kidnapping." "We believe this patient is smuggling illegal immigrants into the country." "I'm writing a Ph.D. thesis and I need a quick look at a sampling of patient records."

The intense interest which has been focused on the records of Program patients is not surprising. By definition, every applicant for treatment identifies himself (herself) as a criminal who has not only been engaged in the illegal act of possession of narcotics and the paraphernalia associated with its use, but who has also generally supported the high price of a physical dependence on heroin through criminal activities. In addition, there is the extraordinary prejudice which society at large, and law enforcement agencies in particular, (xxxvii) harbor against patients and former patients; the adage "once an addict, always an addict" persists, and little distinction is made between the heroin user on the street and the patient receiving medical and ancillary care in a clinical setting. Finally, unlike the elusive street addict, applicants and patients by the tens of thousands are known to be conveniently listed in the files maintained by large treatment programs such as the NYC MMTP. Addiction treatment program records are consequently a logical pond in which to fish for suspects.

The Problems of Inconsistency

In establishing and implementing a policy of absolute confidentiality, the NYC MMTP was hampered by the practices of other methadone programs. The 1972 Procedure Manual of the Santa Clara County Methadone Program, one of the most prestigious and widely known programs in the country, stated that, "The names and addresses of patients entering the program are forwarded to all law enforcement agencies.... Requests for information about patients by law enforcement officials should be answered in a very circumspect manner. It is reasonable to confirm that a particular patient is or is not currently on the program, but any additional information must be regarded as part of the confidential medical records of the clinic.... When a patient is discharged, however, this fact is reported to all the agencies to whom the original report of his entry onto the program was made. The same policy is followed if a patient is absent for a period of two weeks" (87) (xxxviii). A similar orientation was expressed by a methadone program in New Orleans, which also routinely provided names and addresses of clients to the police (88). Undoubtedly a great many other addiction treatment agencies in New York City and elsewhere did likewise.

An additional problem in implementing the internal policies of the NYC MMTP was created by the abuses of secondary sources to whom the Program must report. It has not been unusual for an individual to state: "We were already told by the Department of Social Services that Mr. Z. is a patient in one of your clinics; all we want to know is which clinic he attends" (xxxix).

Consistency within the Program itself is of primary importance in maintaining credibility. While occasional deviations from established policies and procedures are inevitable in a large program such as the NYC MMTP, (xl) these instances can be minimized by the clear definition of terms:

In the light of Program experience, the definition of "patient" was expanded to include applicants for treatment and former patients, as well as those individuals who are currently enrolled.

"Patient information" was not defined explicitly until a District Attorney attempted to persuade a court that photographs were not part of the "medical record" and thus not covered by the usual rules which apply to confidentiality of treatment information. It would obviously vitiate the intent of the laws, regulations and policies governing confidentiality if patient identity were excluded from the protection given other patient information. The current definition of patient information is intended to be all-inclusive: "...all reports, records, photographs, or data maintained in connection with the operation of the Program. It includes the fact that a person is currently in the Program, was in the Program, or has ever applied to the Program, as well as any information which may be communicated orally regarding a patient" (89).

The term "Program" has, from the outset, included the NYC MMTP Central Office as well as each of the component treatment units, and access to patient records is not limited to the staff in the clinics.

Since almost all of the clinics comprising the NYC MMTP are administered under contract by hospitals, it was necessary to make explicit reference to "hospital records" which identify patients as participants in the Program. Although such reference is incorporated in the confidentiality section of the Policy and Procedures Manual and is contractually binding on the hospitals, no satisfactory safeguard has been developed to ensure that institutional records are, in fact, afforded the same stringent protection which applies to all other Program records.

The Rationale for Maintaining Confidentiality

When demands for information are refused, the Program is frequently accused of being indifferent, or overtly hostile, to the needs and the concerns of society. Ironically, the protection of the community is one of the primary objectives in maintaining confidentiality, without which addicts would not be attracted into to treatment. The underlying premise which guides the Program's policies is that addicts, if denied meaningful and acceptable treatment, will exact a tremendous toll on the general population because of the antisocial life style which is associated with illicit drug use.

An area of particular concern is the crime attributed to narcotic addicts. Although controversy exists regarding both the dollar cost of addiction to society and the causal relationship between drug use and crime, society clearly benefits when large numbers of addicts enter treatment (this is especially true of methadone maintenance, with its demonstrated ability to retain patients and assist them in assuming productive lives).

Consequently, policies which are intended to facilitate the apprehension and prosecution of an individual criminal, but simultaneously discourage thousands from seeking treatment, will prove counterproductive. It was this conclusion which prompted Congress to endorse the confidentiality provisions of the 1972 Drug Abuse Office and Treatment Act: "...the strictest adherence to the provisions of this section [on confidentiality] is absolutely essential to the success of all drug abuse prevention programs. Every patient and former patient must be assured that his right to privacy will be protected" (90) (xli).

Another are which has received considerable publicity is the apparent association between drug addiction and child abuse and neglect (92). By providing medical care and appropriate ancillary services to large numbers of former heroin addicts, the Program obviously helps their children as well. Regrettably, the potential impact of this assistance is frequently overlooked by child welfare agencies, which demand complete access to patient records in the course of investigating individual cases. In refusing such access, the Program has attempted to explain that if it were no longer in a position to assure patients and prospective patients of confidentiality, many thousands of children would suffer as a result.

The justification for strict confidentiality of patient information is not to protect criminals, child abusers, or any other antisocial individuals who might be patients in the NYC MMTP. Rather, it is to protect society, which in countless ways bears the enormous burden associated with drug addiction.

Exceptions to the Rule

a. Disclosure with Patient Consent

An unyielding policy of absolute confidentiality will inevitably conflict in certain instances with the patient's interests. It would be ridiculous to refuse to inform a medical facility of a patient's status in an emergency situation, when such information is recognized as vital to the individual's survival. Similarly, there are many occasions when the patient, in his (her) own interest, wishes to have certain information released to employers, probation or parole officials, insurance companies, and perhaps even to friends or relatives. Such consensual release of information is expressly permitted by the confidentiality regulations of the Federal government, and by the policies and procedures of the NYC MMTP (xlii). Certain conditions, however, must be met:

Disclosure requires the written consent of the patient

The consent must specify precisely what information is to be released, to whom, and for what purpose

The NYC MMTP insists that a consent for the release of patient information be contemporaneous

The last condition is extremely important although, regrettably, it is not a prerequisite of consensual disclosure in the Federal regulations. An informed, voluntary consent requires that the patient know the precise nature of the information to be released; this condition can hardly be met when disclosure is authorized for the future release of urinalysis results, counseling notes, etc. Further, the relative advantages and disadvantages of permitting the release of information are determined by current circumstances, which will generally change over time. Authorization for disclosure which is signed long before the fact would legally justify release of information even if the patient subsequently decides that such release is contrary to his (her) interests (xliii). For these reasons, the policy of the NYC MMTP has been to refuse to honor consent for the release of information which is not contemporaneous. The Policy and Procedures Manual specifies: "No patient shall be permitted to sign a release form which is blank, which has not been completely filled out prior to signing, or which provides for the release of information at a future date" (95).

A frequent argument raised by those who demand patient information without contemporaneous consent is that they are seeking disclosure only to "help the patient." Probation Department personnel, for example, often state that they will return a client to custody if assurance is not given that the individual is doing well in treatment. The NYC MMTP, however, has consistently maintained that agencies must prevail upon their clients to authorize release of the required information. If an agency has lost contact with a client, the Program generally offers to take the name of the individual in question and relay a message, if indeed he (she) is a patient, but the delivery of such a message is neither confirmed nor denied, since that would reveal the person's status in the Program.

b. Disclosure without Patient Consent

There are four situations in which disclosure of confidential information is made by the NYC MMTP without the authorization of the patient:

In the case of a medical emergency

To prevent multiple simultaneous enrollment in more than one methadone program

For purposes of audit, evaluation, and research

With the authorization of an appropriate court order, in cases where crimes are committed by patients in Program facilities

c. Medical Emergencies

In medical emergencies, three conditions must be met before disclosure by the NYC MMTP is made without patient consent:

There must be reasonable grounds for believing that a bonafide medical emergency exists, which threatens the life or health of the patient

There must be an indication that release of information from the patient's NYC MMTP record is essential for effective treatment

There must be assurance that the patient is medically unable to sign a release form permitting the disclosure to be made, or reason to believe that delay in obtaining written consent would jeopardize the patient's treatment

d. Preventing Multiple Simultaneous Enrollment
in More than One Methadone Program

From its inception, the NYC MMTP has participated in the Methadone Information Center operated by The Rockefeller University, a computerized registry established by the State to prevent multiple simultaneous enrollment; identifying information on every person enrolled in a methadone maintenance program in the metropolitan New York area is contained in the registry. Although the NYC MMTP has found that the "problem" of multiple enrollment is minimal, (xliv) City (97) and State (98) regulations continue to mandate participation in the system, and these requirements have not been challenged by the Program [a similar requirement by the Federal Food and Drug Administration was dropped in 1974 (99).]

e. Audits, Evaluation, and Research

All methadone programs are obliged to permit the various Federal and State regulating agencies to spot check records for compliance with existing laws and regulations governing methadone treatment. Although there has never been any evidence that the agencies involved have abused this authority, the potential exists for using an audit as a subterfuge for gaining access to confidential information. The following incident heightened the Program's apprehension concerning audits: In September, 1974, the Deputy Director of the NYC MMTP received a call from a Group Supervisor of the Drug Enforcement Agency (D.E.A.), asking for information about an individual who was under investigation and believed to be a patient. The request was denied, whereupon the agent candidly stated that he could obtain the information surreptitiously in the course of a routine inspection of clinic records. Protesting this conversation with the D.E.A. District Director, we elicited a formal response which acknowledged that gathering confidential information in the course of an audit, to aid in a criminal investigation of a patient, was both inappropriate and illegal (100). Despite the assurance in that particular case, there is no way to eliminate the ever- present threat to patients' privacy which is inherent in any disclosure to agencies permitted to review clinical records.

Since the NYC MMTP is supported entirely through public funds, outside evaluation, requiring virtually unlimited access to patient files, has always been accepted as a necessary complement to the internal analyses of Program performance. Independent evaluation has been carried out by the Methadone Evaluation Committee, chaired by Dr. Frances R. Gearing of the Columbia University School of Public Health. Relying on verbal assurances, more implicit than explicit, the Program has never insisted upon formal guarantees for the protection of confidential information released to the Evaluation Committee. In retrospect, though there has been no evidence that patients' privacy has been compromised, the lack of a written agreement setting forth the conditions under which the data would be maintained was irresponsible.

In few areas has the demand for confidential information been as insistent, and refusal met with as much indignation, as in the case of research. Due to the extraordinary size of the NYC MMTP and the comprehensiveness of its data, innumerable requests have been received from researchers seeking access to Program records. Cooperation with these projects, however, has been on a highly selective basis, and any study which entails providing names or other identifying information to third parties has been routinely turned down. (xlv)

Two specific research projects to which the NYC MMTP has consistently supplied confidential patient information on all admissions, without patient consent, are the New York City Narcotics Register and the State Office of Drug Abuse Service (O.D.A.S., previously known as the Drug Abuse Control Commission). In the case of the Narcotics Register, the New York City Health Code mandates that reports of known or suspected drug addicts be submitted by any person who "...has knowledge of or gives care to a narcotics addict or drug abuser" (102), but the Health Code also includes an absolute prohibition against the release of any information which identifies individuals for any reason whatever (103). The legal protection afforded the files of the Register has never been challenged in the ten years of its existence.

The contractual obligation to report names and other sociodemographic information to the O.D.A.S. on all patients (at the time of admission and at termination) has created considerable concern. The O.D.A.S. serves not only as a funding and regulating agency, but also as a provider of treatment services to involuntary clients who are certified and committed by the courts. For all practical purposes, the distinction between the O.D.A.S. and a law enforcement agency is merely semantic: The O.D.A.S. defines clients who leave its facilities as "absconders" and "escapees"; its officers issue warrants and return recalcitrant clients to institutions. In light of the Office's legislated responsibilities as a custodial agency for certified addicts, there is inevitably a strong temptation to utilize the information from voluntary programs as a means of locating thousands of clients for whom warrants are outstanding. This temptation must be especially difficult to resist since the O.D.A.S. Data Center routinely produces special listings, by reporting program, of patients who previously absconded from its facilities.

Despite the fact that there exists no concrete evidence implicating the O.D.A.S. in any abuse of the information it receives, the dual mandate of the Office as an enforcement agency and an addiction treatment and research organization led to an increasing sense of concern. In December, 1974, the NYC MMTP notified the O.D.A.S. that patient admission and termination information henceforth would be identified by a unique number, but would not include name, address, or other identifying data. In response, the Office insisted on the immediate resumption of reporting of all information, including names, and stated that financial support would be discontinued if the Program failed to comply (104). The timing of this confrontation unfortunately coincided with the emergence of New York City's severe fiscal crisis. With the specter of a loss to the City of almost $4 million in State aid, and in the absence of Federal support for the Program's position, the City soon backed down. Reporting was reinstituted, with the hope that new Federal regulations, due to be promulgated during the first half of 1975, would protect programs against such a reporting requirement.

The revised regulations, published in proposed form in May, 1975, did, in fact, prohibit Federal and State agencies from maintaining any form of "directory" or "listing" of patients in addiction treatment programs in connection with audit or regulatory functions (105). Paradoxically, however, they left State agencies with the authority to mandate disclosure of any and all patient information "...for the purpose of conducting scientific research or long-term evaluation studies" (106). The self-proclaimed research functions presented by the State as the rationale for submission of identifying data on all patients cannot be challenged; programs which are dependent upon the State for funding, accreditation or licensure have no recourse but to comply with any demand which is made (xlvi). Despite strenuous protests by the NYC MMTP, these new regulations went into effect on August 1, 1975.

f. Disclosure Pursuant to Court Orders

According to Federal regulations, addiction treatment program records may be disclosed pursuant to a court order which is issued on the basis of a finding of "good cause"; in assessing good cause, "...the court shall weigh the public interest and the need for disclosure against the injury to the patient, to the physician-patient relationship, and to the treatment services" (109).

Through the end of 1974, the NYC MMTP had never been compelled to make disclosure based on court orders initiated by an outside source. However, there have been instances where the Program itself sought a court order permitting it to disclose information without patient consent. These cases involved criminal activities perpetrated by patients on the Program premises.

The first such instance which arose is illustrative. A patient who was quite distinctive in appearance because of his size and hair color entered one of the Program clinics in April, 1974, wearing a stocking mask. The patient's identity was so unmistakable that when he approached the nursing station one nurse immediately commented to a fellow staff member: "Why do you suppose G- is wearing that stocking over his face?" The patient proceeded to draw a gun and seize a considerable amount of methadone. Although this crime took place late on a Friday afternoon, I was able to obtain a court order in less than 3 hours authorizing release of the patient's name, address, and photograph to the local police precinct (xlvii).

In another case, a patient assaulted a Unit Supervisor, hitting him over the head with a telephone and causing a concussion. A counselor immediately called the police and revealed the patient's name and address; since this was in direct violation of Federal regulations, the City's Corporation Counsel subsequently refused to seek a court order permitting the release of additional identifying information, including the patient's photograph. The patient was never apprehended, and the case served to emphasize to the staff the necessity of adhering to the procedures which apply in such instances.

Notes

xxxvii. A survey of attitudes of police chiefs in 27 major cities of the United States concluded: "The prevailing tone [with respect to addiction treatment] in the interviews was one of skepticism. Treatment hadn't worked" (85). Methadone treatment, in particular, was "... controversial in police circles, and among the chiefs interviewed the predominant attitude was not favorable" (86).

xxxviii. The experience of the NYC MMTP is that the inquirer's primary interest almost invariably is limited to determining whether an individual is enrolled in a program, and what his (her) address is. An additional and somewhat related question, asked especially by parole and probation officers, is whether the individual has been discharged from treatment.

xxxix. For several years, addicts were required by the New York City Department of Social services (D.S.S.) to prove that they were enrolled in addiction treatment programs to be eligible for welfare assistance. When confirmation was provided by the Program, pursuant to written authorization of the patient, it became part of the client record maintained by D.S.S., ,which refused to apply any special confidentiality provisions to such data.

xl. For example, a woman whose pocketbook was stolen took it for granted that the thief was a patient in one of the patient's clinics which happened to be in the neighborhood; the Unit Supervisor, in flagrant violation of Program policies, permitted her to view photographs of all enrolled patients. Ironically, this incident took place in the midst of the court battle stemming from my refusal to divulge photographs subpoenaed by a Grand Jury in connection with a homicide case (see Chapter 6).

xli. The same rationale was restated by the Special Action Office for Drug Abuse Prevention in introducing the specific confidentiality regulations authorized by the 1972 Act: "If society is to make significant progress in the struggle against drug abuse, it is imperative that all unnecessary impediments to voluntary treatment be removed.... The only effect of [the addict's] enrollment is to diminish the likelihood of his continued criminal conduct, and if the price of this is to isolate the records generated by the enrollment itself, this is a small price to pay indeed in light of the social benefits" (91).

xlii. It is of interest to note that in the case of venereal disease records maintained by the Department of Health, the New York City Health Code precludes the release of information even with patient consent (93). This absolute prohibition against disclosure under any circumstances also applies to information contained in the New York City Narcotics Register. The rationale is persuasive: if individuals are empowered to authorize disclosure of sensitive information, they may readily be coerced by others to do so even when it is not in their own best interests.

xliii. This issue has particular relevance in the case of addicts who are released from custody by the criminal justice system on condition that they enroll in a treatment program. With respect to such patients, the Federal confidentiality regulations not only permit, but expressly mandate, that the initial open-ended consent to disclosure be irrevocable (94).

xliv. The experience of the NYC MMTP agrees with that of methadone programs in Washington, D. C., where only 20 alleged cases of attempted multiple enrollment were uncovered by a centralized "footprint registry" in the course of processing some 5000 admissions (96).

xlv. For instance, several follow-up studies which have been implemented in New York involve determining the current status of former patients with the help of the police department, parole and probation agencies, Department of Social Services, the Social Security Administration and other agencies. The program has refused to permit names of patients or former patients to be submitted by researchers to any outside agency. Disclosure by researchers to third parties was eventually prohibited in revised Federal confidentiality regulations which went into effect in August, 1975 (101).

xlvi. This blanket authority of state agencies to demand unlimited access to patient information for alleged research purposes is in direct conflict with the stated intent of the regulations, "...to leave [the decision to make disclosure for research purposes] for interpretation on a case-by-case basis by those who must apply it in practice: the researchers who seek the information, and the programs which supply it" (107). Also, the Federal regulations state: "Patient identifying information may not be disclosed to a funding source, as such, whether with or without patient consent.... [I]t is clear that Congress did not intend funding sources, as such, to have access to patient identifying information" (108). Nevertheless, it is solely through the threat of withholding funds that the New York Office of Drug Abuse Services has been able to compel programs to submit "research" data.

xlvii. The epilogue to this case is that the police, armed with the identifying information, failed to apprehend the thief; several months later he was shot and killed following an attempted robbery of another methadone program in New York City.