Big data is an enigma when it comes to healthcare, as described by a panel on Wednesday at the third annual Health Privacy Summit in Washington, D.C., hosted by Patient Privacy Rights. On one hand, according to Deloitte principal Deborah Golden, there are infinite positive possibilities for big data use, such as improving patient safety via openly available medication information.
On the other hand, according to Harvard professor Latanya Sweeney, big data also represents big privacy issues.
"A lot of our problems come from giving data away," Sweeney said.
Much of the conversation focused on those problems, particularly as they related to data being used without patient consent--or knowledge that they gave consent.
"In the U.S., we tend to take a sector-specific approach to privacy regulation," David Jacobs, an attorney with the Electronic Privacy Information Center, said. "We're nowhere near where we should be as far as consumer access to their own medical information to find out where it does and to exercise control over it."
Golden acknowledged increased data openness leads to questions about who truly owns different information, in particular mentioning opt-in and opt-out policies of health information exchanges. She also, however, talked about the potential of such data to spur proactive--rather than reactive--care by providers.
"We're seeing the creation of communities of care" for prevention, Golden said.
Sweeney expressed skepticism about HIEs, though, saying they would get us to an "interesting space" where more data will be available, but the validity of that data would be questionable.
"[HIEs] give the illusion of complete data, but there could be missing critical pieces," she said. "I'm afraid that could lead to clinicians doing the wrong thing, which could lead to patient harm, which could lead to more lawsuits."
When asked by the audience if patient consent is more of a pie-in-the-sky theory than an actual reality, Peter Bootsma, Counselor for Health, Welfare and Sports at the Royal Netherlands Embassy in Washington, D.C., said that in other nations like his own, it's not.
"Data is owned by patients in other countries," he said. "There shouldn't be different laws applicable [in different situations]."