Health / Pharma

Consumer health and data privacy issues beyond HIPAA

The issue of consumer generated health data is on that is near and dear to my heart,” Federal Trade Commission Commissioner Julie Brill told attendees at an event focused on the protection of such health data earlier this month. “…Big picture, consumer generated health information is proliferating, not just on the web but also through connected devices and the internet of things.” As Brill noted this kind of health data are “health data flows that are occurring outside of HIPAA and outside of any medical context, and therefore outside of any regulatory regime that focuses specifically on health information.” That’s why it falls to the FTC to oversee privacy-related concerns for consumer generated health data.

“I was at the Consumer Electronics Show in January and was really wowed by much that I saw,” Brill said. “Some of the devices that I saw were particularly focused on health and the quantified life. One in particular that struck me was [Rest Device’s] Mimo, a onesie developed to measure the heart beats, respiration rate, and other vital signs of an infant or newborn. It could send information to an app, to the parent’s mobile device. Think about the benefits to any parent who is worried about SIDS or might want to get their baby to sleep better or get themselves to sleep better.”

Brill also noted the rise of step counting devices, the trend of some physicians Googling their patients, and what she called an ongoing ethical debate about physicians “friending” their patients on Facebook. “There is also the now infamous example of companies that are generating their own health data about their customers with respect to their purchases, like Target did with its pregnancy predictor score,” she recalled.

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