town in the foothills of the Blue Ridge Mountains which is the site of both great public and private mental institutions. My brother-in-law, the late Dr. James King Hall of Richmond, Virginia, who served for a time as President of the American Psychiatric Association, spoke with me often of the nature of mental illness. As a lawyer, Judge and State and Federal legislator, I have dealt with the problems of mental illness and the psychiatrist-practitioners who seek to make whole and wholesome the disturbed minds and spirits of distraught men and women. No one was more shocked than I at the arrogant break in to the office of Daniel Ellsberg's psychiatrist, Dr. Lewis Fielding. This dramatic invasion of a physician's professional office and files for extraordinarily non-professional motives, as well as the cavalier comments made about it before me and my colleagues at the Senate Watergate hearings, by men who had held positions of the highest public trust, became the straw that broke the camel's back. The officers of the APA moved quickly; in the summer of 1973 they asked their sister organizations to join them in exploring the problem. The enthusiasm with which these groups responded and joined in the Confidentiality Conference planning process revealed the depth of their concern. So did the Conference itself, a lively gathering attended by representatives of groups ranging from the American College of Surgeons and American Bar Association to the National Congress of Parents and Teachers. The consensus was that it was a most productive meeting, where issues were aired with vigor and there were real opportunities for fruitful interchange. No attempt was made in a few days to settle the complex and profound issues raised. Instead, the Conference panels outlined the magnitude of the problem and the chief areas of concern, and voted to launch a Commission to address them expertly, and in depth, as they deserve to be addressed. We who participated devotedly hope that this distillation of the various overlapping Conference panel reports and proceedings, by a seasoned health care writer, Natalie Davis Spingarn, will serve as a base from which the National Commission on Confidentiality can build. The Commission's task the production and preservation of health care records confidentiality, and the establishment of guidelines for appropriate access to them-is both difficult and challenging. There are few endeavors as important to us all. SAM ERVIN, JR. Former United States Senator I. The Problem: And it shall come to pass, DEUTERONOMY XXX Doctors must know. Doctors and others tendering medical care must have a patient's complete health history before they can use their medical judgement and treat successfully. Doctors must keep records. The public must know too-sometimes. It must have facts in hand on which it can make judgements and then act. Those responsible for the control of contagious disease must know if an epidemic of smallpox breaks out. Criminal justice officials must check a former mental patient's history. Medical researchers can unravel nature's secrets only by studying patient histories. Carriers must assure travelers that airplane pilots or bus operators are in top condition. Insurance companies must verify claims to prevent abuse and spiraling premium costs. A Simpler Time Not too many years back, medical record keeping was a comparatively simple process, like much else of the business of living. The family doctor knew his patients, often long and well. He filed the facts about their health in the safe crevices of his mind-from birth through childhood sicknesses and accidents to chronic disease and terminal illness. Neither a subpoena nor a snoop could have turned up much patient information in the old fashioned practitioner's office: some cards, perhaps, noting the dates of patient visits, prescriptions and charges, nothing more. That time has passed. There are more and more different kinds of Americans-patients and practitioners alike. We move more, travel more, get sick in more scattered places and take advantage of the training and skills of more diverse specialists. Each year sees over a billion patient visits and at least 28 million hospital stays. Everything is more impersonal, and more technologically complex. Since it is no longer possible reliably to relegate patient histories to the doctor's memory, they must be recorded, and then filed systematically. And more people say they need those records, for more diverse reasons, more quickly. Keeping the records is one thing. Keeping them confidential is quite another. Once secure in the privacy of the doctor's office or hospital record room, and available in part at least only to other physicians (usually specialists to whom patients were referred) medical records have now found their way into a bewildering array of other places-from insurance company or welfare office to school, university, employer and even credit bureau files. Those who want them propose structural changes to satisfy their own needs-not the patient's. A few surmountable questions (How to make them more orderly, and less bulky? How to keep them so they become more useful to the other professionals and paraprofessionals? Should they be problem, or source oriented?) have multiplied until the integrity of the record itself is in question. Abstracted again and again, they are forwarded, often with the patient's consent, to invisible and unknown persons, and then fed into computers which can handle many millions of instructions per second. They may not even be formally forwarded: Those responsible for hospital medical records report an appalling lack of record security regulations. Almost anyone can put on a white coat and rifle through the secrets of your illness, be it alcoholism or tuberculosis. As a result, you may-or may not-get that job. You may or may not be judged minimally brain damaged for life by a fourth grade teacher. Your health insurance claim may or may not be honored; you may, or may not, get the life insurance you applied for. The threat to confidentiality is of even greater concern to psychiatry than to the rest of medicine. To serve the patient effectively, the psychiatrist must probe into the most intimate details of his life-his ancestry, his experiences, his public and private activities, his attitudes and relations with family, fellows on the job, friends and enemies, and everything indeed that goes through his mind-loves and hates, hopes and fears, impulses and fantasies. And the psychiatrist must instill complete confidence in the patient that he will not reveal such secrets to others. For if a troubled gall bladder is not a sensitive issue, a troubled mind is. The same society which accepts physical illness as natural, stigmatizes mental illness; even one visit to a psychiatrist may pose difficulties for a patient and provide ammunition for those who might wish to harm him. The Problem That Crept Up How has this extraordinary problem crept up on us? Why have physicians not moved to guarantee the "holy secrets" sworn to in the 1 Hippocratic Oath? Why have not patients been more sensitive to the dangers of funnelling their health facts to the third parties and their insatiable computers, often for rather loosely identified reasons? In part, because both the doctors forwarding records and the patients granting permission or even asking that their records be forwarded, usually do so for positive motives. They must get well, or stay well; they must have medical care for themselves and their families. In return for access to their records they will get money from insurance companies (to whom they and their employers have paid premiums over the years) which will help cover expensive specialist and hospital bills. Or they will be able to assure prospective employers of their sound health and frame of mind. Unwittingly, the deed is done. Most patients do not contemplateindeed, do not even know that those receiving records may feed them, warts and all, into the memories of their own computers and through network arrangements, into those of a growing number of private and public data centers throughout the country. The Medical Information Bureau (MIB) for example, a computerized center of medical data set up by the insurance industry, is available to hundreds of commercial companies; the Multistate Information System (MIS) containing complete, mental health histories, links psychiatric hospitals, clinics, and outpatient health centers in the New England area. The development of professional standards review organizations (PSROs) through which medical personnel monitor their own peers' work, and the imminence of national health insurance raise the possibility of national data banks with access to patient records across the country. Blessing and Curse Beyond this, the computer's image is a good one, deservedly or not. If we think of it at all, in conjunction with our own personal health records, we are apt to regard it as a blessing, rather than a curse. It makes possible the handling of huge amounts of complicated information in a very short time. It feeds data desperately needed for national planning to the administrators of a complex, urbanized society and mass economy. Harvard Law School Professor Arthur R. Miller has travelled the country sounding the clarion call about the blessings and "blasphemies" of the new technology, and posing the computer-privacy dilemma. In various medical centers doctors are using computers to monitor physiological changes in the body chemistry that precede a heart attack. They search for an "early warning system" so that treatment is not delayed until the actual heart attack. The time may not be far off when each of us is given an identification number at birth for tax, banking, draft, social security and health purposes. If one is in an accident or falls ill away from home, local doctors can speed diagnosis and effective treat ment by using this identification number to retrieve his medical history from a remotely located central data bank. But the same electronic sensors that can warn us of an impending heart attack can locate us, track our movements, and expose our emotions and our thoughts. The identification number that alerts a strange physician to an allergy to penicillin can become a leash around our necks, and make us the subject of constant monitoring. The administrative conveniences provided by the high degree of computerized information centralization give those who control the recording and preservation of personal data an unprecedented power. over us, and are subject to abuse. Professor Miller lists the dangerous risks which lurk in the spiraling collection of health-among other-data. The first is Parkinsonian: as recording processes have become cheaper and more efficient, as capacity to handle information has increased, the data collection pertaining to a larger number of variables has intensified. (Just compare a 1955 and 1975 federal income tax form to see the consequence of available electronic data storage and retrieval). The danger is that many information gathering agencies will go beyond even their current levels of inquiry to ask about a variety of personal subjects which have nothing to do with the matter at hand-including medical history. What's more, as information accumulates, the contents of the individual dossier tend to appear more and more impressive, despite the "softness" and dubious accuracy of the data. The fat file imparts a heightened sense of reliability, which, coupled with the myth of computer infallibility, makes it less likely that an independent evaluation will be made by the user. Here horror stories abound: a talented college graduate cannot find a job because a sixth grade teacher reported her mother was emotionally unstable. A brilliant high school student cannot get into college because a guidance counselor-gym teacher without any psychological training once filed a comment of "possible minimal brain damage." Then too, the centralization of information from widely divergent sources creates serious risks of using data out of context-records will circulate; sources will be overlooked, information about people is valuable, especially if it is derogatory. The problem of contextual accuracy is best illustrated by the unexplained and often incomplete arrest record. Is it the business of credit grantors, employers, detective agencies and political or government investigators that a young man was once found "guilty" of demonstrating for desegregation in the South? Or against the Viet Nam War in the West? One might equally ask if it is their business that a man or woman consulted the family doctor about impotence or frigidity, or is being treated successfully for a nondisabling, chronic cardiac condition, high blood pressure or diabetes. Lastly, unregulated information surveillance might possibly damage |