Per CNBC, Facebook’s head of health research Dr. Freddy Abnousi—the Facebook executive behind the company’s canceled plan to share anonymized health insights with medical providers like hospitals—still thinks that combining the kind of information Facebook has on its users with medical records could be a health care boon.
At a recent conference Abnousi told attendees that researchers have limited access to data beyond demographic trends, and that “social and behavioral variables” could provide valuable insights into patient care, CNBC wrote. The site continued:
Abnousi advocated for large-scale access to more granular data on patients’ social and behavioral characteristics, which he said far outweighed the three other key factors impacting mortality rates: genetics, exposure to risks such as asbestos and access to quality health care. He didn’t specifically call for using Facebook or Instagram user data for these purposes.
“The primary driver of health outcomes in the United States are social and behavioral variables,” he said. “Really understanding what these social determinants of health are should be our primary area of focus.”
Though Abnousi didn’t directly mention Facebook user data, it’s fairly obvious that his employer has a hoard of that kind of stuff on hand and is interested in how to make use of it. For example, the Centers for Disease Control’s information section on behavioral factors for health mentions data points like drug and alcohol use, unprotected sex, smoking, discrimination, income, housing status, and others. According to CNBC, data like where people live, friend networks, marital status, spirituality, and employment type have been measured to have a “bigger impact on whether a person survives a massive heart attack than their genetics or exposure to risk, [Abnousi] said.”
Facebook has long sought to find a use for this kind of data. As the Washington Post noted in April as the secretive hospital-partnership project was put on hold, its approach to soliciting the data suggested that it was trying to acquire it without explicit opt-in consent:
Even setting aside the voluminous evidence showing that true anonymization of data is virtually impossible, Facebook’s stated intent was never to leave the data anonymized. But requesting the hospitals’ data in that form would allow Facebook to sidestep the issue of obtaining patients’ consent, as required by federal law.
The company has reason to believe that, if asked, patients would not consent to this practice. In 2016, Facebook was sued by a metastatic cancer patient who accused the company of violating his privacy by collecting data about his participation on cancer websites outside of Facebook. The case was dismissed and is under appeal, but this clearly has not stopped the company from pursuing data initiatives in health care.
As the Post wrote, patient records held by hospitals, health care plans, and other providers like pharmacies are privy to the Health Insurance Portability and Accountability Act (HIPAA), which mandates the information be kept private. But by pseudo-anonymizing the data, those entities covered by HIPAA can market the information to others in secret—regardless of whether the psuedo-anonymized information could later be paired with other data, such as Facebook’s, to create detailed records of an individual’s medical history. As CNBC wrote in its original report on the partnership:
Facebook’s pitch, according to two people who heard it and one who is familiar with the project, was to combine what a health system knows about its patients (such as: person has heart disease, is age 50, takes 2 medications and made 3 trips to the hospital this year) with what Facebook knows (such as: user is age 50, married with 3 kids, English isn’t a primary language, actively engages with the community by sending a lot of messages).
The project would then figure out if this combined information could improve patient care, initially with a focus on cardiovascular health.
Facebook said this data would only be used for research, which is to say it insists it will only be used for benign purposes. But as the Post commented, its platform is essentially a black box that is “impossible for outside users to fully understand,” raising ethical questions about how it is collected. There’s also the question of whether Facebook, which keeps on getting embroiled in privacy scandals and is still reeling from a hack that allowed attackers to gain access tokens to 50 million users, can be trusted to safeguard that data or not share it in ways users would never have consented to.
Either way, the site is still thirsty to do something with your health data, perhaps whether you want to share it or not.