News Feature | November 10, 2016

Privacy Issues Remain The Biggest Obstacle In Harnessing Personal Data

Christine Kern

By Christine Kern, contributing writer

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The digital revolution is being held back by privacy concerns.

Big Data has been touted as the door to the future for some time now, promising a wealth of opportunities to reduce healthcare costs and improve outcomes at the same time. And yet, experts say, privacy issues remain the biggest obstacle in harnessing the power of personal health data.

According to a panel discussion at Fortune’s first Brainstorm Health conference, despite the fact healthcare is on the cusp of a digital revolution using data to drive important advances, the lack of clarity surrounding medical privacy is holding it back, Fortune reported.

There is still a wide gulf between today’s technological potential and “the kind of tangible, wide-scale transformation that can turn America’s ‘sick care’s system into one that prioritizes wellness and prevention. And bridging that divide will require a serious discussion about medical privacy and data sharing,” said one expert at the Brainstorm Health conference.

The panel discussed just what it means to be healthy and the power of data analytics and digital health tech to help prevent diseases and improve healthcare outcomes. According to James Park, co-founder and chief executive of Fitbit massive data collection has a three-pronged advantage, explaining, “The promise of all this data is to be able to screen people more effectively. It’s the ability to give them more personalized treatments and guidance, and the ability to monitor people over the course of their treatment.”

Yet, this means getting both insurers and insured invested involved in the process which raises privacy concerns, as University of Southern California (USC) professor of medicine and engineering David Agus pointed out. For example, AARP sued the federal government over its employer wellness incentive programs arguing it forced older workers to reveal sensitive personal health information to employers or pay higher insurance premiums.

Park did acknowledge the current HIPAA privacy regulations remain ambiguous and are not attuned closely enough to the latest developments in the use of Big Data. And NIH deputy director for science, outreach and policy Kathy Hudson underscored the increased cyber risks that accompany the leveraging of personal information, as witnessed by the risk of cyber attacks against major health providers. She said, “What keeps me up at night is data security. Having a million people’s data is going to be a big, fat target.”

“There are tremendous advantages to big data in healthcare,” Gerard Magill, a professor of healthcare ethics at Duquesne University in Pittsburgh, told the LA Times. “It’s about creating a comprehensive approach to using medical information.” But it also means saying goodbye to individual privacy. “Big Data requires that information; it’s nonnegotiable,” Magill said. “Individual privacy is gone for the common good.”

And most experts agree Big Data for healthcare is largely uncharted territory and it’s unclear how the advent of vast troves of available medical information will affect public and private insurers. It is clear existing privacy laws were not designed for the current technology, and they may be insufficient to address the scope of information sharing now possible.

Ultimately, the Brainstorm Health panel concluded, while Big Data analysis provides great opportunity for the future of medical care, some flexibility in privacy policies will be necessary to complete the transformation of data into actionable outcomes for disease prevention.