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Data privacy vs. public health
By Tom Scheck
Minnesota Public Radio
October 4, 2002

An administrative law judge will hear arguments Friday on a state plan to collect medical information on nearly everyone in Minnesota. Supporters say the project could dramatically improve public health. Opponents, however, say the proposal could violate patient privacy. They're asking the judge to stop the plan before it even takes effect.

Twila Brase
Twila Brase, with the Minnesota Council on Health on Health Care, says the proposal could change how patients interact with their doctors.
(MPR Photo/Tom Scheck)

The administrative law judge will have to determine if the risk of violating a patient's privacy outweighs the promise of collecting valuable medical research on the state's patient population. The health department plans to track nearly all Minnesotans who have health insurance. They also plan to collect patient information from hospitals in 2004 if they get state funding. The Health Department says the information could help them identify hot pockets of chronic disease in the state. Opponents say it's too risky.

"For years and years and years and years we have managed to have an advancing health care system without the health department having access to all of our data," said Twila Brase, with the Citizen's Council on Health Care in St. Paul.

Brase says that since the plan would collect individual patient data at the outset, including names and addresses, patient privacy can be violated. She prefers a system that would allow patients to decide if they want to share their medical information.

Dave Orren
The Minnesota Department of Health's Dave Orren says they have taken necessary steps to ensure that the massive data collection won't get in the wrong hands. He says the state's public health system could benefit greatly from the project.
(MPR Photo/Tom Scheck)

"The patient will start to look at the health care system in a very different manner," said Brase. "The health care system will no longer be a health care system that will be just there for them. It will now be a data collecting tool for the state government and everything they say and evgerything they do and everything that happens to them within the health care system can now be data that is sent to the state government."

The health department's Dave Orren says the department needs to collect names so they don't double count individuals in the database.

"Can we give assurances that it will never get out to the public?" said Orren. "No we can't. That's why I say there's a small theoretical risk."

Orren says they've taken necessary steps to ensure that patient information won't get into the wrong hands. He says their system will encrypt patient names and create a unique identifier for every person. Orren says any information that identifies the patient in the master database would be erased. He says names would then be held in a paper form at a different location so they can update the database once a year.

Orren also says it would take three people to access the list of names and database. He says that ensures that one person won't have full access to the data.

Orren says the promise of a massive health database should outweigh citizen fears because it allows them to track and possibly treat chronic diseases like asthma, diabetes and heart diseases.

"If you broaden your view to public health, what's the risk of not doing this compared to the risk of doing this?" said Orren. "I would point out to you that in the last century there has been an increase in life expectancy of thirty years and twenty to twenty five of those years are attributable to public health interventions."

Dr. Richard Woellner
Dr. Richard Woellner, with the American Lung Association of Minnesota, says he supports the program because it could help treat chronic diseases throughout the state.
(MPR Photo/Tom Scheck)

Several groups support the health department's plans because it could provide a snapshot of the state's health problems. A number of minority groups, for example, say the information could help them understand and solve Minnesota's racial health disparities.

Dr. Richard Woellner is a retired lung doctor who sits on the board of directors at the American Lung Association of Minnesota. He says the database could also allow investigators to treat chronic diseases in specific areas.

"If there are areas that have much more asthma than other areas it would be nice to target those areas both in terms of preventing it and in terms of focusing our efforts where there's more asthma," said Woellner. "Inner city children have a vast increase, reportedly, in asthma. It would be nice to be able to target these groups and say we know that there's an increase in this population, we need to target our efforts there."

Privacy advocates argue that it doesn't matter how valuable the health data is if there's even a slight possibility it could be accessed by the outside world. One caller to MPR's Midmorning program said he's fearful as long as there's a list connecting a person's name that can be linked with their medical data.

"Hackers right now can get in to banks and get your mother's social security numbers and maiden name and get your social security and do identity theft. Those people are going to get a hold of that list and drug companies could get that information and insurance companies can get that information. It's never going to be safe."

The administrative law judge could rule in November.

More from MPR
  • Audio: Midmorning discusses the issue (Oct. 1, 2002)