Double indignity; you can't see your medical records - but everyone else can.

DOUBLE INDIGNITY 

Ed Mulligan set up his picket in front of Community-General Hospital in Syracuse, New York, in August 1976. Community-General had seen pickets before, but this one was different. Mulligan wasn't demanding higher wages or making a political statement. He wanted the hospital to give him something it had denied him for more than three years: a copy of his medical records.

After four years of illness and two operations, the 71-year-old cancer victim had requested a copy of his records from Community-General. When the hospital denied him access to all but the results of a few tests, Mulligan filed a $440,000 lawsuit. Since New York does not require hospitals to release medical records to patients, his case was thrown out of court. So Mulligan took matters into his own hands. Carrying a sign that read, "This Hospital has Something to Hide,' Mulligan picketed Community-General for several weeks. He succeeded in getting the hospital's attention, but only enough to cause it to sue him for creating a nuisance. Only after the local media did stories on Mulligan's picket did the hospital allow him to see a laundered version of his records, a pyrrhic victory which, after three years of time, money, and frustration, was all Mulligan could hope for.

Mulligan's persistence is unusual, but his problem is not. In dozens of states, patients are denied the critical, personal details in their medical records. Yet insurance companies, law-enforcement officials, medical professionals, intelligence agencies, and others have easy access to these records--usually without the patients' knowledge. As a result of this injustice, some people have been denied jobs, demoted, or given inadequate medical care. Worse, these actions have been taken on the basis of medical records that-- without any input from the patient--are often misleading and sometimes inaccurate.

Nevertheless, the debate over access to medical records has received little media attention. Moreover, legislative proposals to give patients access to their records have lost in all but 14 states. Much of the opposition has come from doctors who have spent a lot of time and money to keep their patients in the dark.

Insane system

Pamela Abbott was 20 years old when she entered Bennett Hospital in Plantation, Florida, to have a benign tumor removed from her bronchial tube. The operation required two surgeons and an anesthesiologist to remove the growth and keep oxygen flowing to her lungs. At some point during the operation Abbott went into cardiac arrest. By the time the medical team could react, her brain was permanently damaged. "The best we could determine,' says David Kahn, the lawyer who represented the family in its malpractice suit, "is that for fome reason the tube that was put down her throat to her lungs was blowing oxygen not into her lungs, but into the operating room.'

None of this, however, is reflected in the record of the operation. While it is noted that the patient was in trouble, there is no explanation for why Abbott's heart stopped. A section of the report titled "Remarks' also says nothing, and Abbott's post-operative status is noted, amazingly, as "satisfactory.' Eleven days after the operation, she died.

Abbott's parents requested her medical records. The hospital refused their request, the family sued, and after two years of litigation the Abbotts accepted a $450,000 settlement from the surgeons involved. But they never got a look at their daughter's complete medical records. When the hospital released the records after Kahn obtained a subpoena for them, 90 percent of Pamela Abbott's X-rays, and all of her brain wave reports were missing.

The Abbotts were lucky to get that much. Florida is one of 36 states where physicians are obligated to supply a patient's medical records only to another treating physician. Though the vast majority of doctors probably keep accurate records, many patients suffer hardship needlessly because of errors they could easily correct if they had access to their files.

That's what happened to Anne Stern who, in 1974, underwent a lung-cancer operation at the prestigious New York University Medical Center. The operation was successful, but in the diagnosis section of her discharge summary, along with "adenocarcinoma of the right lower lobe,' and "basal cell cancer skin of face,' a resident, reading from another doctor's notes, added "paranoid schizophrenic.' For three years Stern could not find a doctor. None was willing to provide even the most basic treatment to a woman whose medical records indicated she was crazy.

But Stern was perfectly sane. She learned of the misdiagnosis only after her frustrated search for a doctor led her to ask for a copy of her medical records. After being denied access, Stern turned to the New York Public Interest Research Group, which, threatening legal action, succeeded in getting Stern her records. When she saw her diagnosis, Stern went to three psychiatrists, each of whom found her sane. She showed the reports to the hospital, which wrote her a letter of apology. "The resident . . . who filled out the records at that time,' wrote Arthur Boyd, the doctor at the University Medical Center who had been responsible for Stern's records, "apparently misinterpreted these notes and put down that diagnosis.' As upset as she remains over the misdiagnosis, Stern is equally angry that for three years neither the hospital nor the doctors who refused to treat her told her she had been disgnosed as mentally ill. There is no more compelling argument for patient access than this: What if she had been paranoid schizophrenic? Not treating Stern was bad enough, but the doctors who knew of her diagnosis yet did nothing didn't seem to care whether she got any treatment at all. They offered no referrals, no suggestions, nothing. They didn't even tell her family. "They shied away from me like poison and I didn't understand why,' she says. "A thing like this certainly should have been communicated to my family, if not to me.'

While such extreme cases are rare, patients with less serious problems also suffer because they can't see their medical records. When an attorney in Albany, New York was diagnosed in 1980 as having a rare form of rheumatoid arthritis, she made an appointment with an expensive specialist in Boston. To assure that her records would arrive in time for her appointment, she asked her family doctor and the Albany Medical Center Hospital whether she could bring copies of them with her. Though her doctor gave her copies of those records he had on file, the hospital told her its files would be made available only upon written request from the Boston physician. As she feared, her records didn't come in time for her appointment. "It was terribly frustrating,' she says. "You're already sick and you're already anxious. It made me feel awfully suspicious and distrustful. I didn't understand why they wanted to hide them from me.'

The larger question

As patients fight their way through legal barriers and reluctant physicians in search of information about themselves, the doors to medical records rooms are thrown open to numerous third parties. Lawyers can obtain subpoenas for medical records, police can simply walk into local hospitals and demand them, and insurance companies can withhold payment for their clients' medical treatment until they've read them.

Such easy access has led to abuse. In testimony before the Senate Committee on Governmental Affairs in 1979, John Shattuck, then director of the Washington office of the American Civil Liberties Union, told of a woman who, despite having graduated Phi Beta Kappa from college and having scored in the top 1 percent on the National Medical College Admission Test, was turned down by 13 medical schools because her medical records indicated she had once been a voluntary patient in a psychiatric institution. Shattuck also testified that in 1976, a man was denied a license to drive a taxi in New York City because the cab company read in his medical records that he had been placed in a mental institution for six months. No matter that at the time he was a 13-year-old orphan and that the mental hospital was the only place authorities could find for him for that short period.

Employees have also been victimized by their bosses on the basis of incorrect medical records. In 1983, two years after he was hired as a customer-service representative for a computer manufacturer, a New York man found himself demoted to a dead-end job loading paper into printers. His misfortune, although he did not know it at the time, was the result of incorrect diagnoses made by a company doctor that he was a "possible manic depressive,' and "possible schizophrenic.'

He might still be working at a job he calls "one step off the assembly line' if he hadn't been lucky. While undergoing a compulsory hearing and vision examination six months after he'd been demoted, he saw his medical records sitting on the desk next to him. Over the protestations of a nurse, he scanned them and found the mistaken diagnoses. "After I saw what was in them, I talked directly to a company doctor about getting copies of my records because they were obviously wrong,' he says. "I was flat out refused.'

Denied his records and discouraged in his career, he took a leave of absence and completed substantial work toward a master's degree in computer science. When the company refused to promote him despite his additional expertise, he took his case to the New York State Division of Human Rights. Three years after requesting his medical records, he still hasn't seem more than his diagnosis sheet. But since threatening legal action he has been promoted to a computer programming position and the company has apologized for the mistaken diagnosis.

To get some idea of how accessible your medical records are to others, consider the Medical Information Bureau (MIB). A nonprofit service based in Boston, MIB is a huge repository of information gleaned from medical records. Using MIB's computer, the more than 800 life insurance companies belonging to the service share information about their policyholders. While policyholders routinely sign consent forms giving their carrier access to their medical records, few realize that, through MIB, medical information about them is available to insurance companies across the country. There is no guarantee that the records on file with MIB are any more accurate than Anne Stern's, but one thing is certain: right or wrong, the information in MIB's computer is often the basis on which an insurance company decides whether to accept your policies and claims--and right or wrong, the patient isn't allowed to see it.

The access to individuals' medical records provided by MIB begs a larger question posed by all abuses of medical records: is third party access to such private records a violation of individual civil rights? "It's sort of the last, best privacy issue,' says Robert Belair, a partner at the Washington law firm of Kirkpatrick and Lockhart, who twice worked on federal legislation to regulate access to medical records. "After all, if your medical records aren't private, what is?'

Misplaced mystique

On the surface, the answer to the medical records mess seems simple: give patients access to their records and restrict access to third parties. But for more than 12 years, legislators, patients' rights groups, and medical professionals have failed in repeated attempts to do just that. At both the state and federal levels, legislation to restrict third party access has met strong opposition from doctors. In those 14 states where bills have passed guaranteeing patient access, there have always been fights. In New York State, a patient access bill was passed into law last July after a four-year battle. The bill, which doesn't address the question of third party access, represents a compromise between patients' rights advocates and the New York State Medical Society, which assured itself of a strong voice in the debate over the bill by directing its political action committee to spend $226,975 on legislators last year--more than all but one PAC in the state. Most of this money was spent on members of the legislature's health and insurance committees, where records access bills have languished again and again.

Since they were first proposed by the New York State Department of Health in 1982, patient-access bills were repeatedly blocked in the Republican-controlled Senate, where the powerful medical society organized letter-writing campaigns, phone calls, and meetings with key legislators. The bill that finally did pass allows physicians to decide which patients may see their records. Legislation to give patients in California access to their medical records was proposed three times before it finally passed the legislature in 1982, over the intense opposition of the California Medical Association. Like other advocates of patient access, Howard Berman, the former majority leader of the California State Assembly who introduced the bill, encountered opposition primarily from doctors worried about malpractice suits--a fear that is likely to increase in the years ahead. "Young doctors coming out of medical school are scared' of such cases, says Dr. Robert Pulle, a general practitioner in West Chester, Pennsylvania. Other physicians sensitive to malpractice are, he says, "becoming very paranoid about giving patients their records.' Some argue the malpractice paranoia is overstated. "The litigious climate that prevails between doctors and patients is prominent despite [restricted] access to records,' says Arthur Caplan, associate director of the Hastings Center, a New York organization that studies ethical problems in health care. He argues that if doctors became more open with patients, an informed relationship would emerge that would lead to fewer malpractice claims. But even if it didn't, the only time open records would lead to a successful malpractice suit would be when there's something in the record that indicates negligence. And that's as it should be. Arresting the growth of malpractice claims by suppressing the evidence is ridiculous.

Doctors also frequently proffer the argument that medical records are the property of the physician, created for his use and not for the eyes of the patient. "We feel that it is a record that is made by the doctor for his purposes and is not the property or inalienable right of the patient,' says Dr. Donald T. Lewers, president of the Maryland physicians association. But over the past 20 years, as patients have begun to contest this notion, most courts have ruled that while the doctor owns the record itself, the patient has an interest in, and a right to, the information in those records.

The courts are right. After all, the records at issue are composed of information about the patient, provided by the patient, to a physician who is being paid by the patient or his representative. The patient's right to see his medical record is just common sense.

Of course, the whole idea of denying any patient knowledge of his illness is dubious, yet doctors also claim that if patients see their records it will increase their anxiety and make them less likely to comply with their physicians orders.

Certainly there may be cases where telling a patient details of his illness would be more dangerous than not telling him. That is why every patient access law that has been proposed or enacted leaves ample room for appeal. The question is not whether some of the patients could be hurt some of the time by seeing their records, but whether we're willing to let doctors have power over decisions in which they have potentially adversarial interests.

But all this concern is probably academic. Physicians' concerns have proved spurious in one rather large test case--the federal government hospitals. The Privacy Act of 1974 gave patients access to records at federally-run hospitals. Administrators at these hospitals have found few of the problems predicted by doctors--even in the area of psychiatric care. "The patient knows what's going on and knows why he's being treated as he is,' says Dr. Harold Thomas, a spokesman for St. Elizabeth's, a federally-operated mental health facility in Washington. "They understand better how they can progress to the next step.'

Patient access has also been tested in the private sector. A study at the Given Health Care Center at the University of Vermont, in which 100 patients were given copies of their own records, found that 84 percent were more careful about taking medicine prescribed for them, and 97 percent worried less about their health care.

There is one aspect of the medical records issue on which doctors and hospitals are most intractable, and which careful legislative craftmanship of patient access laws may begin to change. The mystique of the physician as healer has bred an unequal relationship between doctor and patient in which the patient is asked to blindly trust while the doctor magically heals. The paternalistic role physicians have carved out in our society leaves little room for a curious, well-informed patient to participate in his own care. Older doctors are particularly guarded. "It's usually the most senior physicians who just don't buy the idea of showing patients their records,' says Bob Leamer, counsel to the New York Assembly Health Committee.

Bills giving patients access to some control over their medical records are before many state legislatures. Given the history of previous bills, however, reform efforts may drag on for years. In the meantime, people like Ed Mulligan have no choice but to wear out their shoes, and their patience, fighting the medical community just to see information about their own bodies.