Official medical records are protected by strict privacy laws. But everyone who wears a fitness tracker, uses a health app, shops online, searches the internet for health information, or posts about their health creates a “shadow record” of that data. A team led by U-M researchers Nicholson Price and Kayte Spector-Bagdady reviewed current laws and regulations surrounding these shadow medical records and say they need more attention.
Pooled together, this information can fuel progress in health care research and innovation, says Price, an assistant professor of law. But few rules apply to how shadow data is stored and used—and how the privacy of the people behind the data is protected.
“Not all industry involvement in health data is a bad thing,” said Spector-Bagdady, an assistant professor at the U-M Medical School and member of the U-M Center for Bioethics & Social Sciences in Medicine. “Industry can help propel innovation. But relying on loopholes to collect personal health data without knowledge is predatory.”