Prison Medical Records: A Source of Medical Discoveries? Or a Privacy Issue?

May 24, 2011 - WASHINGTON — -- It sounds like something out of science fiction -- doctors using a cache of prisoner health records to produce medical breakthroughs for the betterment of society.

But it's not.

Medical researchers across the country are eager to sift through electronic health data in hope of finding future health benefits.

And in an effort to control rising health care costs in the federal prison system, the Inspector General of the Department of Justice, in a 2010 audit, recommended a plan to maintain analytical health data on inmates.

And while there are privacy concerns, the hope is that the strategy will improve prison health care.

"Electronic medical records have the potential to improve the quality of care in a prison system," David Fathi, director of the ACLU National Prison Project.

The recent push for more electronic medical records by Washington has made it feasible for researchers to get their hands on useful medical data. The 2009 Recovery Act signed into law by President Obama included $20.6 billion in incentives for the health care industry to adopt electronic medical records.

"Any time you want to gather data, it's always easier when it's in electronic form," said Devin McGraw, director of the Health Privacy Project at the Center for Democracy and Technology.

In the past, health insurance companies did most of the widespread analysis relying on data gathered from claims filed in databases. With records in paper form, the analysis could not be completed as fast and potential benefits went unclaimed.

Paper medical records in a prison are a problem, according to Fathi. As prisoners are frequently moved from facility to facility, an inmate's medical history often follows at an excruciatingly slow pace. A doctor without complete records could, for instance, give an inmate a medication to which he or she was allergic, causing a potentially fatal reaction.

Fathi said he hopes that an electronic system will help improve communication between prisons.

Privacy Concerns

Meanwhile, a fight is brewing over whether mining medical data violates patients' privacy.

The Supreme Court heard arguments in April over whether a private company had a First Amendment right to sell data-mining results to pharmaceutical companies. In that case, the company argued that data mining could help advance medical discoveries. Opponents argued that the sale of information is a breach of doctor-patient confidentiality.

While current law does protect individual medical data from being released, "de-identified" medical data is currently unregulated.

When researchers want to use medical data from your doctor's chart, they will strip out such data as your ZIP code, last name or email, thus disassociating the medical data from the personal information -- and making it impossible, in theory, for a researcher or a report reader to identify individual patients.

Under current law the patient doesn't need to give consent to use their medical data in research as long as the data is de-identified. The Department of Justice could gather medical data in the same way through the federal prison system.

"The most important question is whether the information remains identifiable," said Fathi. The ACLU says it isn't concerned about releasing prisoner data, as long the information can't be used to identify individual inmates.

But a paper released by the Center for Democracy and Technology in 2009 questions the effectiveness of health de-identification. Because every human body is unique, "A statistically unusual pattern, such as a variation in blood pressure, can be used to identify an individual."

So does the mining of electronic medical records pose a reasonable privacy risk?

"It depends on who you ask," said McGraw.