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Testifiers concerned about collection of medical data
by Laura McCallum, Minnesota Public Radio
January 22, 2003

Twila Brase, with the Citizens' Council on Health Care, says the proposal could change how patients interact with their doctors. (MPR Photo/Laura McCallum)

Opponents of a state database of medical records are urging the Legislature to stop the project. Health officials say collecting medical information on nearly every Minnesotan will allow them to better track health problems. But opponents say the plan violates patients' privacy rights.

St. Paul, Minn. — The state health department plans to start compiling a medical database next year that would include everything from who's had a stroke or an abortion to who takes Prozac.

An administrative law judge ruled last month that the state can collect the information without patient consent. About a dozen people told the House Health and Human Services Committee that they oppose the idea.

Robin Coninx, a mother of four, says one of her children was born with a congenital defect. She says she doesn't want the state to collect data on her daughter and her family.

"I do not know if a birth defects registry will help families with children with disabilities, but shouldn't a person have a choice whether to be on it or not? Just because there is a difficult medical condition in my family, I don't believe that my family should lose our right to privacy," she said.

Others raised the spector of "Big Brother" gathering private information. Minneapolis attorney Michael Rodning Bash, who has represented health plans, says the data collected is among the most sensitive in society.

"Do you have problems with alcohol? Have you been treated for depression? Do you suffer from heart disease? Does someone in your family have cancer? We don't talk about these things except with family, close friends and our health care providers," he said.

State health officials say the data will help them improve health care. They say they'll be able to track data on diabetes or asthma or other health problems.

Assistant Health Commissioner Dick Wexler says the state of New York collects this data. He says after New York published hospital mortality rates for bypass surgeries, death rates dropped.

In Minnesota, several health advocacy groups such as the American Lung Association have testified in support of the health department's plans. Wexler says security measures would protect privacy by separating patient information from medical records.

"There's the demographic data -- the personally identifying data -- and there's the health data. Both of those come in encrypted form, and they do not come connected or merged," Wexler said.

But an information technology specialist told lawmakers he didn't think the health department could keep the records private. Jim Rea said over time, personal information would be linked with medical data. Others said the goal of better health tracking doesn't justify the collection.

The House committee was packed with opponents of the proposed rule, and no one except the health department spoke in favor of it, prompting one lawmaker to ask if anyone had been excluded from the hearing.

Twila Brase, a registered nurse who is president of the Citizens' Council on Health Care, brought the committee a stack of letters from people who say they're scared about losing their privacy.

"Another woman called to say that she had cancelled her annual physical because she didn't want to be part of a government record. So what you can see here is before the system even gets set up, we have restricted the autonomy of individuals," Brase said.

Gov. Tim Pawlenty has said the health department's plans go too far, but hasn't said whether he'll try to change them. The Republican-controlled House is likely to try to repeal the rules. The DFL-controlled Senate is more supportive of them.

"The reason that the Legislature in the past has asked the department of health to collect this data is because of the rising cost of health care," according to Sen. Becky Lourey, DFL-Kerrick, chair of the Health and Family Security Committee. "And we don't have a clue on how to get health care costs into a more affordable situation without knowing how we're spending our money currently and what our outcomes are."

Lourey has asked the health department to explain its plans to her committee. She says she understands the privacy concerns, but hopes the health department will be able to ensure that privacy is protected.

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