Facebook wanted patient data. It actually made some sense at the time.
Facebook began speaking with hospitals last year about the possibility of matching anonymized user profiles with health data in an effort to improve medical care, according to a CNBC report exposing the program. Facebook confirmed its work to CNBC but said it had hit “pause” on the program last month — presumably following the Cambridge Analytica scandal — to focus on “doing a better job of protecting people’s data” and being clearer about how it’s used.
The plan had been to get hospitals to share anonymized medical information — such as health issues and age, but not name — and match it up with anonymized Facebook accounts that appeared to belong to those same people, according to the report. It would then somehow use insights from users’ Facebook behavior to inform medical treatments. In one example CNBC gives, it says Facebook might have determined that an elderly user didn’t have many local friends, so a hospital may want to send a nurse to check in on them while recovering from a surgery.
In a statement to CNBC, Facebook said, “This work has not progressed past the planning phase, and we have not received, shared, or analyzed anyone’s data.”
Though the report makes it sound like the data would be customized to specific patients, Facebook said in an email to The Verge that it would instead be used more generally. “The project would not attempt to provide health recommendations for specific people,” a spokesperson said. “Instead the focus would be on producing general insights that would help medical professionals take social connectedness into account as they develop treatment or intervention programs for their patients.”
This probably wasn’t a great idea even without the privacy scandal from Cambridge Analytica engulfing the company. Essentially, Facebook proposed collecting medical data without users’ permission, then secretly pairing it to their profiles. That is an immense violation of privacy.
Though Facebook was going through medical channels to receive the data — it was in talks with organizations including the Stanford Medical School and the American College of Cardiology, according to CNBC — it sounded like patients would not have needed to consent to their information being shared.
Facebook tells us that there would have been no “de-anonymizing of data” and that data “access would theoretically be limited to select people from Facebook and our medical research partners at the [American College of Cardiology].”
Here’s the explanation Facebook gave CNBC for its motivation behind this program:
“The medical industry has long understood that there are general health benefits to having a close-knit circle of family and friends. But deeper research into this link is needed to help medical professionals develop specific treatment and intervention plans that take social connection into account. With this in mind, last year Facebook began discussions … to explore whether scientific research using anonymized Facebook data could help the medical community advance our understanding in this area.”
Cathy Gates, the interim CEO of the American College of Cardiology, also gave CNBC a statement, which added, “This partnership is in the very early phases as we work on both sides to ensure privacy, transparency and scientific rigor.”
Facebook had initially focused its research on cardiovascular health. None of the statements make it sound like Facebook is putting an end to the program. Any medical organization that has been in talks with Facebook would be wise to consider carefully the privacy scandal still roiling the company.