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Most patients like what they see on the computer monitor on my desk. There are lists of their medications and medical problems, laboratory results and reminders to do mammograms. They are impressed that all the doctors at our hospital work with the same information about them. They are amused that I can check their test results from a laptop computer on an airplane. But more than a few people find cause to worry in this cutting-edge system. Could their diagnosis of diabetes leak to employers? Insurers? Companies making products for diabetics? A few years from now, will their genetic codes be flying around the Internet?
These are not paranoid fantasies. Threats to our medical privacy are proliferating as technology speeds the flow of information--and people are fighting back. Patients are increasingly reluctant to release their health records, and states are passing laws to restrict access to them. Unfortunately, these efforts can backfire. In Maine lawmakers tried earlier this year to bar the release of any information without a patient's written consent. The law seemed reasonable at first, but the result was chaos. Doctors caring for the same patient couldn't compare notes without first seeking permission. Clinical labs had to stop giving patients their results over the phone. You couldn't even call a local hospital to find out if a loved one had been admitted. Confidentiality is a vital component of the trust between patients and physicians, and protecting it is worth some inconvenience. But information is the lifeblood of good health care. In short, privacy can be hazardous to your health.
Consider what happens when a doctor writes you a prescription. If that doctor doesn't know about every other drug you're using, the results can be disastrous. Patients have died because one doctor prescribed Viagra for impotence and another ordered nitroglycerin for angina--a combination that causes dangerous drops in blood pressure. Fatal reactions have also occurred when patients on Prozac or Zoloft were given monoamine oxidase inhibitors (another type of antidepressant). Most deaths from drug interactions could be prevented by databases that show every prescription written for a particular patient. But insurers usually withhold that information, for fear of offending subscribers. The result is that physicians have to rely on what patients remember, or choose to disclose.
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Drug interactions are not the only potential hazard. Suppose a person whose records are on file at one hospital shows up in the emergency room of another. Even if the records can be transferred, state law may bar the release of information about mental illness or HIV status, forcing the ER physician to fly half blind. A laceration on a patient with a history of severe depression may warrant more than sutures--it may have been a suicide gesture. Likewise, pneumonia in a patient with HIV requires different tests and treatments than it would in someone else.
Even when privacy advocates concede that doctors need unfettered access to patients' records, most favor shielding them from HMO administrators. But a responsible health plan can put clinical information to good use. As part of a "disease management" program, an HMO may use computer software to determine whether patients with a chronic condition, such as asthma or hypertension, are filling their prescriptions and showing up for appointments. Those who fall behind may get a reminder by mail or phone. These programs can measurably improve people's health, but patients often miss out on them by refusing to authorize access to their records. Some plans hesitate even to launch such programs. One Massachusetts HMO is now debating whether to send flu-shot reminders to members with HIV. The program would almost surely save lives, but it would just as surely draw criticism as a breach of confidentiality.
Privacy advocates are especially wary of electronic data. If we can't keep tabs on nuclear secrets at Los Alamos, they ask, how likely are we to keep computerized medical records out of hostile hands? But electronic record keeping may actually reduce the risk, even while making information more accessible. No one can tell who has looked at a paper chart, but anyone who opens a secure electronic record leaves a computerized fingerprint. A psychiatrist at a New England teaching hospital was recently fined for peeking at an acquaintance's medical records seven times. The bad news is that it was so easy for the psychiatrist to gain access. The good news is that she was so easily caught.
The real challenge is not just to detect such breaches but to prevent them. The doctors in my network will soon have to answer a series of questions before opening a patient's computerized record. We'll have to explain how we're involved in the patient's care, and how long our need for access will continue. And logging on to our system requires not only a password but also a smart card that generates new access codes every 30 seconds. Anyone who stole my smart card would also need my password, and vice versa. These safeguards cost money and time, and doctors will grumble about the extra keystrokes. But with a little creativity and common sense, we'll find a way to protect privacy while ensuring that doctors have the information they need to take good care of people.
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