State collects files on medical patients Privacy issue is raised as U.S., insurers give confidential data

THE BALTIMORE SUN

State officials are building an extensive computer bank of Marylanders' medical records, alarming doctors and civil libertarians who fear it threatens the privacy of patients.

Information on a patient's visits to doctors and other health professionals -- whether for a cold, treatment of AIDS or a mental illness -- is being fed into the computer system.

Hundreds of thousands of patient records already have been collected this year without patients' knowledge. Experts say Maryland is on the way to having the nation's biggest computerized health profile of patients and doctors.

"The crux of the relationship between doctor and patient is confidentiality," said Dr. Jennifer Katze, a Towson psychiatrist who opposes the efforts of the Health Care Access and Cost Commission. "This utterly destroys that."

State officials strongly deny that, asserting that effective privacy safeguards are in place.

But doctors predict that no matter what precautions the state takes, some patients will avoid treatment rather than risk disclosure of sensitive mental and physical problems.

Some conditions are so stigmatizing they could, if known, cost people their jobs, destroy their families and even drive some to suicide, doctors say.

Privacy and civil liberties advocates warn that no computer system is secure in the age of hackers. They worry that prying eyes -- such as private detectives, police and judges -- will try to tap into it.

"Why on Earth does the government need to collect that information?" demanded Stuart Comstock-Gay, executive director of the American Civil Liberties Union of Maryland. "It is incomprehensible to me."

A 1993 state law directs the Health Care Access and Cost Commission to "compile statewide data on health services rendered by health care practitioners and office facilities."

ZTC The commission especially wants to know how much money is being spent by region, and which services are frequently performed.

The commission will soon present the General Assembly its first report on this information, which in the future could help policy-makers devise better programs for providing care, controlling costs and making insurance more affordable, officials say.

As a first step this year, 10 private insurance companies and the federal Medicare and Medicaid programs have voluntarily submitted computer tapes on the 1992 and 1993 treatment and health costs of at least 50 percent of the insured population. Data for 1994 will be gathered next year.

The commission refused to identify the insurers because it promised them anonymity for cooperating. But when asked, several companies readily acknowledged their participation: Blue Cross and Blue Shield of Maryland, Mid Atlantic Medical Services Inc. and HealthPlus.

The state's long-term plans are far more ambitious -- and cause the deepest misgivings.

Following the General Assembly's directives, commission officials are encouraging the growth of private electronic claims clearinghouses that would link doctors and insurers in a statewide computerized network. This could give the commission ready access to a far greater amount of information than is available today.

Patient privacy will be protected, commission officials insist. State employees cannot determine patients' identities, they say. Insurers now providing records are identifying patients by coded numbers, not by name.

No information is currently "on line," vulnerable to telephonic computer spying.

"Let us not misconstrue this," said John Colmers, executive director of the commission. "The commission is not in the business of establishing a database for collecting detailed information about individual patients for any purpose other than those described in the statute."

The panel is moving slowly, he said, and has formed a 15-person privacy and confidentiality advisory committee headed by Elaine Johnston, benefits director at Baltimore Gas and Electric Co.

While agreeing that privacy issues need to be studied, Mr. Colmers said that state hospital regulators have been collecting patients' hospital records for 20 years without problems.

But, critics counter, state employees were charged this year with illegally selling information about Medicaid recipients to HMO recruiters.

In the wake of these violations, "the commission asks us to trust their security measures. Regrettably, we cannot," the Maryland Psychiatric Society stated.

The psychiatrists are leading a coalition of mental health groups seeking to restrain the state's appetite for information.

They're contacting state legislators, the governor and state and national professional organizations.

Doctors object to:

* Identification numbers. While better than using names, this doesn't adequately protect patients, critics say. Birth dates, zip codes, gender information, diagnoses and treatments -- among the 34 pieces of information sought by the state -- make "identification an easy matter in many instances," the psychiatric society contends.

Doctors especially are worried about the commission's interest in assigning a lifetime number to patients.

At present, patients who switch insurers receive a different number from each. The commission is considering requiring insurers to use the same patient numbers.

State officials say identification numbers are needed to verify the accuracy of insurers' information. Permanent numbers would make it easier to track treatment and health spending patterns. Other data, on age and gender and region, enhances the commission's ability to fine tune its analyses.

* Violating the rights of patients who pay their own bills. Nearly half of all psychiatric patients in Maryland dig into their pockets to pay for therapy, in many cases because they don't trust insurance companies to keep their records private, according to a survey.

In a straw vote that upset psychiatrists, a majority of the commission's advisory panel on privacy concluded last month that the state also should have these records.

Psychiatrists warn that "self-pay" patients -- who place a premium on confidentiality -- won't seek treatment if they know information will leave the doctor's office.

* The state's failure to inform patients that information is being collected. State officials say the law doesn't require this.

But doctors say they shouldn't be required to surrender records without patients' consent.

"If my patient comes to me and says, 'I don't want you to give

any information to anybody about this contact,' whether it's laundered or not, I am obligated ethically not to give out any information," said Dr. Harold I. Eist, a Bethesda psychiatrist who will become president of the American Psychiatric Association in 1996.

Mr. Colmers said, however, that the commission doesn't want to force doctors to contribute information to the clearinghouses. Doctors will want to participate, he hopes, because standardized electronic claims processing can decrease administrative costs.

Yet many doctors and some insurers question the value of the information the state is collecting.

"What good will come of all this data?" asked a skeptical Jeff D. Emerson, chief executive of HealthPlus, an HMO in Greenbelt.

"It's time to rethink" the commission's data-gathering activities, said Angelo J. Troisi, chief executive of the biggest doctors' group, the Medical and Chirurgical Faculty of Maryland. Legislators, doctors and the commission "together have to determine the justification, the expense, and the purpose," he said.

But some groups strongly support commission research efforts and hope that privacy problems can be resolved.

Research is needed to prove that mental and physical health are intertwined, said the Maryland Psychological Association. "If mental health data is not collected we're not going to ever know that," said Casey Ann Hughes, an association lobbyist.

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