When Are Patients Willing to Share Their Data?

Perhaps some in the healthcare industry have it wrong. Maybe patients care less about the security of their data than providers, researchers, and decision-makers think, according to one expert.

Deborah Fisher, MD, associate director of gastroenterology research at Duke University, said she has found that people want to advance medical research. If their health data can help, all the better, she said this week during a Digital Pharma East panel discussion in Philadelphia.

“I think patients also are less concerned in many ways about the security of the data than the rest of us are,” she said. “But they want to know where it’s going and to what kind of good.”

To a lesser degree, people want to know how their data contributions might benefit them personally, Fisher added. And they seem to dislike the idea of someone, like pharma companies, making money off medical records, she said.

Fisher’s point was backed up by a 2013 study in the Journal of the American Medical Informatics Association, which found that patients wish to control their health data. Although participants claimed they would prefer to share little information by default, they would accommodate researchers “if there was a need and they were asked for permission,” according to the report.

Kevin Campbell, MD, a cardiovascular disease specialist and TV personality who moderated the forum, further supported Fisher’s idea. He sits on a digital-focused FDA committee that surveyed people from the US and Europe in regard to “social listening,” or using public social media posts to create a data set, in the post-market surveillance of drugs and medical devices. Then artificial intelligence would scan the information, respondents were told, for adverse events.

Most said they felt OK with that sort of data collection, Campbell noted. Europeans, however, pushed back against the word “surveillance” due to its Cold War connotations.

“So we have to be careful about how we verbalize all these things,” Campbell said, “but this is a very powerful tool.”

Then again, a top-down change might be in order, a third panelist said. John Nosta, president of Nostalab and a member of Google’s healthcare advisory board, said privacy is contextual, and it changes with time. Not long ago, prying eyes would have struggled to find someone’s house, and now anyone can pull up Google Maps and do just that, he said.

Shifting privacy standards obscure how society views healthcare technologies that might still be 2 or 5 years away, Nosta said. The system warrants review, he said.

“It’s time we take another look at HIPAA and really fundamentally look at that from the inside-out,” he said, “because I think our outside-in methodology is cumbersome and problematic.”