- The Washington Times - Sunday, July 6, 2003

Anyone visiting a physician’s office or health facility since April 14, 2003, has almost surely been handed a complicated legal document defining newly acquired patient privacy rights.

These stem from the Health Insurance Portability and Accountability Act (HIPAA) of 1996. And the Department of Health and Human Services (HHS), charged with implementing the law, calls them “the first-ever federal privacy standards to protect patients’ medical records and other health information provided to health plans, doctors, hospitals and other health care provider. … They represent a uniform, federal floor of privacy protections for consumers across the country”

Normally, privacy would be considered to be a good thing. But the law is sufficiently complex and quirky for benefits and risks to be highly unpredictable. Consequently, in a recent column in Internal Medicine World Report, addressed to physicians, I parodied what it would take to configure my medical office to accommodate the requirements of the Privacy Act. The idea of partitions between the seats in the waiting room (analogous to those between stalls in public restrooms), burkas (bought as war surplus from Afghanistan) to completely obscure individual patient identity and ingenious ways to call patients in without using their names struck me just what the doctor might need for comic relief.

The more thought I give the subject, however, the more convinced I become that the HIPAA law is not just an overly complex and bureaucratic way of serving a good cause. Instead, HIPAA’s underlying philosophy of privacy-at-all-costs now strikes me as fanatical and, in some respects, dangerous. It is based on the notion you can never have too much privacy. And the law’s passage represents a glorious victory for single-issue privacy monomaniacs who believe in one-sided coins.

I got an inkling of how wrong this can be when I ran into two of my patients busy gabbing away in the open doorway of one of the examining rooms. Their families had been friends, but since the death of one of the husbands, they hadn’t gotten together. Now they were delighted at the accidental encounter as one was departing and the other was arriving for an office visit.

Jokingly, I said: “I don’t know if it’s still legal for you two to talk to each other. You are violating each other’s privacy.” They laughed, until I began explaining how visiting the doctor is now expected to be done so privately that all people who haven’t been screened and approved in advance are to be considered potentially dangerous to the patient — as if they are pathogenic germs.

This New Victorianism places psychological and communication barriers between people quite analogous to the physical barriers created by Victorian dress. It makes going to the doctor an unmentionable, comparable to going to the toilet, and it creates the illusion that perhaps there are people who do neither. At a minimum, ministering to physical imperfections is perceived as sufficiently embarrassing for it to be concealed or disguised, much as the original Victorians did with bodily functions.

Privacy has always been important in medical practice, but over the years, I have tried to make the therapeutic experience as natural as possible. A solo practice like mine has been for some 30 years is uniquely suited to treat patients in a friendly and personal way. Perhaps HIPAA struck me as a solution in search of a problem because I’ve never had a patient complain because a name was called or visible on the file in the chart rack. To my knowledge, nobody worried that the Spanish-speaking janitor might peruse his or her chart during breaks from dusting and vacuuming at night. Maybe that’s why having patients sign off on receiving a copy of their privacy rights and having me sign privacy contracts right and left strikes me as surrealistic.

Surrealism, unfortunately, can go much further. The tragic suicide of a 19-year-old girl named Suzy Gonzales was recently reported in the San Francisco Chronicle. This much-loved young woman was depressed and wanted to end her life. She concealed her pain from everyone who knew her and sought the warped privacy of the Internet to find a discussion group to “help” her with instructions on how to obtain a lethal dose of cyanide. The group she contacted is “pro-choice” and boasts of aiding in at least two dozen “successful” suicides in addition to that of Miss Gonzales. Its members feel no obligation to provide distraught individuals with even a single exposure to a different point of view because that would be a violation of their civil right to commit suicide — and their privacy.

Privacy rights have become an agony for the families of disturbed young people, particularly schizophrenics. There are families that have in fact abused their children and from whom the children must be protected. But when the patient is in and out of hospitals, repeatedly stops taking medication and refuses to let either family or even treating physicians and psychologists have access to relevant clinical information on the grounds of “privacy,” the inmate is truly running the asylum.

One need only hear the mother of one such patient describe how difficult it is to provide and obtain information to keep her daughter from abusing the system in masochistic ways, to understand how distorted a one-sided perspective on privacy can become. Another mentally ill patient with a compliance problem whom I know of was discharged from the hospital with no supervision or notice to the family. She killed herself within days. Current law allows this.

HIPAA, with even more legal provisions that take leave of common sense, will not make dealing with such situations easier. Nor will it help get good care for self-destructive patients or facilitate judging the quality of the care given.

Medicine is not the only field where privacy concerns create irrational behavior. Consider what would happen to medical research if it were forbidden to access the charts of individual patients (even if de-identified) to independently verify the accuracy of an important study. Yet this is exactly what is being done in education.

A researcher at the Hoover Institution (whose work will not be helped by revealing her name) describes the unintended consequences of the 1974 Family Educational Rights and Privacy Act (FERPA), which forbids the tracking of individual student records in any form from year to year. Without that information, it is impossible to determine what educational interventions help particular subsets of students and to assure the integrity of any study. Also, in the process of protecting the privacy of each student, all are lumped together and treated as if each one of them is nothing more than a reflection of the group as a whole.

No doubt there have been abuses in all these areas. But as TV news commentator Eric Sevareid once said, “All problems are caused by the solutions to other problems.” A one-sided privacy preoccupation that leaves many mental health patients isolated and unprotected, except during interludes when they are hospitalized would not happen in other cultures.

Individual rights and privacy are good, but that does not mean family, friends and even strangers are bad until proven otherwise. Fostering such an outlook would be sinister indeed.

Philip R. Alper, M.D., is the Robert Wesson Fellow in scientific philo-sophy and public policy at the Hoover Institution at Stanford University.

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