Ethical Use of Big Data

Taken from http://www.businessweek.com/articles/2012-05-17/the-health-care-industry-turns-to-big-data:

When patients show up at a hospital, something dangerous happens: They’re looked at by humans. Because of the hustle in busy emergency rooms and admission wards, many patients get only a cursory review of their health, according to Nicholas Morrissey, a surgeon at New York-Presbyterian Hospital. Mistakes can lead to complications or missed warning signs and may increase a patient’s chance of winding up back in the hospital. So Morrissey is working with Microsoft to train computers to make the kind of snap judgments about new patients’ risk factors that hurried humans often flub. “We don’t want to take the intuition and clinical decision-making out of the process,” he says. “We want to facilitate it.”

As hospitals digitize patient records and amass huge amounts of data, many are turning to companies such as Microsoft, SAS, Dell, IBM, and Oracle for their data-mining expertise, which can help medical providers perform detective work and improve care. The so-called Big Data business has already permeated other industries and generated more than $30 billion in revenues last year, according to research firm IDC. It’s expected to grow to close to $34 billion this year in part because of increased use in the health-care industry. Crunching numbers is potentially good business for hospitals as well. By making “meaningful use” of computer systems, they’re eligible for millions of dollars in government funding from the Obama administration’s $14.6 billion program launched in 2009 to encourage adoption of electronic medical records.

The use of data-mining technology has already led to some measurable improvements in patient care. New York-Presbyterian, which started using Microsoft technology to scan patient records in 2010, has reduced the rate of potentially fatal blood clots by about a third, says Morrissey. “I wouldn’t be out there saying we’ve solved the problem, but we’re definitely making progress. That was a significant drop,” says Morrissey.

Seton Healthcare Family, a hospital system in central Texas, learned from IBM software last year that a bulging jugular vein is a strong—and easily observed—predictor that a patient admitted for congestive heart failure is likely to wind up back in the hospital. “We’ve gotten some really tremendous results,” says Ryan Leslie, Seton’s vice president of analytics and health economics.

Patients don’t usually know when their records are being analyzed in this way. Federal law prohibits medical providers from disclosing certain health information without patient consent, but there is an exemption for activities that fall under “quality improvement,” says Susan McAndrew, deputy of health information privacy at the U.S. Department of Health and Human Services’ office for civil rights. During the analyses done at New York-Presbyterian and Seton, for example, patients weren’t informed their medical records were being studied by outsiders’ software.

“People do not like to have researchers of any stripe using their electronic health records,” says Deborah Peel, founder of Austin (Tex.)-based Patient Privacy Rights. “As a matter of respect and autonomy and patient-centeredness, patients want to be asked. When they are asked, by and large they support this. It’s the not-being-asked stuff that’s really bad.”

Deven McGraw, director of the health privacy project with the Center for Democracy & Technology in Washington, disagrees. Notifying patients too often can be unnecessarily confusing. Only ask for permissions, she says, when data “is used in ways that people might not expect,” she said.

An interest debate is presented in this article.  In Seton Hospital, the use of big data has shown to have positive results in patient diagnosis using technology from Microsoft.  While the use of this technology has helped patients immensely, they are not told that their ailments are being analyzed by a third party.  The law, however, does state that the uses of big data in this manner are acceptable and that the patient does not need to be notified under these circumstances.  The other view presented here is that, out of respect, a patient should be notified when their medical information is being seen by a third party.  What do you think?