Group items tagged

On one hand, this is how the internet works now. When we brought our concerns to Better Help the company essentially brushed them off, telling us their methods were standard and that they “typically far exceed all applicable regulatory, ethical and legal requirements.” And it’s true: There are no laws against a therapy app telling Facebook every time a person talks to their therapist, or sharing patients’ pseudo-anonymous feelings about suicide with an analytics company that helps clients measure how “addicted” users are to an app. But it is a particularly stark illustration of how limited medical privacy regulations are in the expanding world of online health. Unless the people who trust Better Help deftly analyze the fine print, they might not have much of an idea of how far their intimate information is traveling, in a way that’s designed to make companies bigger and richer while patients become more easily gamed.

Facebook, for instance, is alerted every time a person opens the app, essentially signaling to the social media company how often we were going to a “session” and when we booked our appointments. (To confirm Facebook’s retention of this information, we downloaded personal data from Facebook and identified the associated records from Better Help.) During a session with a therapist, we found that metadata from every message, though not its contents, was also sent to the social media company, meaning that Facebook knew what time of day we were going to therapy, our approximate location, and how long we were chatting on the app.