What You Don’t Know About Your Health Data Will Make You Sick

You can’t opt out of a shadowy system that’s hungry to know everything about your health — and without knowing it, you may have opted-in to share even more

“There are a lot of loopholes to HIPAA: about what information is actually protected, who it’s protected from, and whether or not you have waived that protection via your own consent.” Credit: Andrii Panchyk/iStock/Getty Images Plus

By Jeanette Beebe

Every time you shuffle through a line at the pharmacy, every time you try to get comfortable in those awkward doctor’s office chairs, every time you scroll through the web while you’re put on hold with a question about your medical bill, take a second to think about the person ahead of you and behind you.

Chances are, at least one of you is being monitored by a third party like data analytics giant Optum, which is owned by UnitedHealth Group, Inc. Since 1993, it’s captured medical data — lab results, diagnoses, prescriptions, and more — from 150 million Americans. That’s almost half of the U.S. population.

“They’re the ones that are tapping the data. They’re in there. I can’t remove them from my own health insurance contracts. So I’m stuck. It’s just part of the system,” says Joel Winston, an attorney who specializes in privacy and data protection law.

Healthcare providers can legally sell their data to a now-dizzyingly vast spread of companies, who can use it to…