Los Angeles Times
February 8, 1999

Jane E. Allen

It's 10 p.m. Do you know where your medical records are?

You might think they're snug in some folder at your doctor's office. But with computerization and growth of the Internet, sensitive information about your medical history can turn up in places you'd never imagine, read by people you've never met.

When a patient visits a doctor, goes to a laboratory for tests, enters a hospital or fills a prescription, that generates a stream of electronic and paper records. All or part of those records may find their way to insurance companies, drug manufacturers, government health regulators, public health agencies, hospital accreditation and quality assurance agencies, and employers seeking to monitor their workers' use of medical benefits.

When a patient enters a clinical trial of an experimental drug or procedure, he or she signs a consent form but may not realize how many parties have access to results and laboratory samples for years afterward.

It's hard to believe that in a country where video rental records are protected by federal privacy law, medical records are not.

An example: Without a legal right to privacy, a Pennsylvania man lost his 1995 lawsuit against a state transit agency charging that co-workers and supervisors improperly learned he was HIV-positive. In Doe vs. SEPTA, the man identified only as Doe contended that because his prescription drug plan let his employers look at how drug benefits were being used, they were able to get hold of Rite Aid pharmacy prescription records showing he was receiving the AIDS drug AZT, thus revealing his HIV status and embarrassing him at work. He said the employer never should have had access to the records. But a federal appeals court found that because his employers were paying for the drug benefit, they had the right to see the information.

That may soon change.

Congress is grappling with several proposals under a mandate to pass comprehensive medical privacy legislation by this August. If lawmakers miss that deadline, the secretary of Health and Human Services is required to issue regulations by February 2000. There are many participants in the debate over regulating access to the records. They must somehow balance competing interests: protecting individual privacy and ensuring access to those who need the information, such as health plans trying to assure standards of care. AIDS advocates find themselves straddling two sides of the debate. They want to protect the privacy of AIDS patients and, at the same time, have access to information about development and testing of new and emerging treatments, said Craig Thompson of AIDS Project Los Angeles. "Privacy really is a very deeply held American tenet," said Mark D. Smith, chief executive of the California HealthCare Foundation, speaking at a recent forum on medical privacy sponsored by the Oakland-based health care charity and Consumers Union's West Coast office. The ultimate nightmare is that "somebody somewhere knows all about you," he said. With the federal deadline for legislation looming, there is a greater urgency now about the need for protections against such nightmares, said Janlori Goldman, director of the Health Privacy Project at Georgetown University Medical School in Washington, D.C.

Some Fear Seeking Care

A survey commissioned by the California HealthCare Foundation and released at the forum "documents that a significant percentage of people in this country are afraid to talk to their doctors, are afraid to be honest with their doctors and in some cases are afraid to seek care," Goldman said.

One in six Americans engages in "privacy protected behaviors," such as paying out of pocket for care otherwise covered by insurance, lying to a doctor about their medical history or being afraid to get care, the survey conducted in November and December 1998 found.

"They're worried the information is going to come back to haunt them in some way. They're worried they're going to lose benefits, lose a job or be embarrassed," Goldman said.

Martha Jiminez, executive director of the Latino Coalition for a Healthy California, said immigrants fear that health reporting requirements will deliver their names to the IRS.

"Qualified aliens," she said, "are not accessing care because of fear."

Betsy Imholz, director of Consumers Union's office in San Francisco, said that if patients don't feel safe sharing information with their doctor, their medical records will be less complete and reliable, putting patients at risk of improper treatment.

Privacy advocates' top priority is encouraging insurers, hospitals and doctors to protect patients' privacy without diminishing the value of the medical information they gather.

That's easier said than done. Latanya Sweeney, an assistant professor of public policy at Carnegie Mellon University in Pittsburgh, demonstrated how easy it is to pierce the privacy in so-called anonymous medical records.

Even when names have been stripped off records that contain date of birth, sex, race and diagnosis, she can reidentify the individuals by cross-referencing with a $20 voter registration list.

'Anonymous' Records Are Identified

In one instance, she looked at data from the city of Cambridge, Mass., population 54,000, and was able to identify former Gov. William Weld because only five people in the city--and only one in his ZIP Code--had his date of birth.

Sweeney compared the medical information industry to a once-smug nuclear power industry and says she is trying "to assure there is no Three Mile Island in computer privacy." In the absence of federal legislation, Sweeney is developing statistical techniques to make it harder to reidentify anonymous data.

While Congress and numerous states appear poised to take action on the issue, a key question is whether passage of a federal law would set a "ceiling" on privacy protection, making it difficult for states to adopt tougher measures.

Sailaja R. Cherukuri, a senior consultant to the California Assembly Committee on Consumer Protection, Government Efficiency and Economic Development, said allowing the federal government to set a ceiling would be "an unprecedented intrusion."

In Sacramento, 17 bills have been introduced in the last three years on medical confidentiality, she said. California already has a patchwork of protections principally governing patients with mental illness, substance abuse, HIV and AIDS. Although those people are legally protected under the Americans With Disabilities Act, "the underlying problem is that once you lose your privacy, you really can't get it back," said Robin Omata, director of health information for the California HealthCare Foundation.

In the world of AIDS patients, "these breaches--while they may be few--are significant. We're concerned about some sort of a federal ceiling that would supersede what's being done in HIV, particularly in California," said AIDS Project L.A.'s Thompson.

"You can have . . . more fines, but the real issue here is to create a . . . climate that regards personal information as private in the milieu of an industry transforming all this data into large databases capable of being disseminated widely," Omata said.

Balancing Ethics and Technology

Medical confidentiality "forces the understanding of medicine as a business, which really is anathema to many people," she said. The industry needs to figure out how to preserve the ethics that are central to medicine and yet take advantage of advancing technology, Omata said.

One of those trying to capitalize on new technology is Jim Clark, the founder of Netscape, whose new venture, Healtheon Corp., is trying to put health records online so pharmacies, laboratories, providers, consumers, payers and employers can have access. He said his system requires secure e-mail.

In another forum presentation, Kathy Hudson, assistant director of the National Human Genome Research Institute, said genetic privacy is a hot-button issue because of fears that information about genetic predisposition to diseases could result in workplace and insurance discrimination.

"We're all walking around with glitches in our DNA. We all have something that runs in our families," she said.

Hudson said the National Action Plan on Breast Cancer is working on recommendations to protect patient privacy in cancer treatment trials. One recommendation suggests federal legislation should restrict third-party access to medical research records. Another says experimental research data that can be linked to an individual should not be placed in that person's health record.