Facebook sent a doctor on a secret mission to ask hospitals to share patient data
Facebook was in talks with top hospitals and other medical groups as recently as March 2018 about a proposal to share data about the social networks of their most vulnerable patients.
The idea was to build profiles of people that included their medical conditions, information that health systems have, as well as social and economic factors gleaned from Facebook.
Facebook said the project is on hiatus so it can focus on “other important work, including doing a better job of protecting people’s data.”
Facebook has asked several major U.S. hospitals to share anonymized data about their patients, such as illnesses and prescription info, for a proposed research project. Facebook was intending to match it up with user data it had collected, and help the hospitals figure out which patients might need special care or treatment.
The proposal never went past the planning phases and has been put on pause after the Cambridge Analytica data leak scandal raised public concerns over how Facebook and others collect and use detailed information about Facebook users.
But as recently as last month, the company was talking to several health organizations, including Stanford Medical School and American College of Cardiology, about signing the data-sharing agreement.
While the data shared would obscure personally identifiable information, such as the patient’s name, Facebook proposed using a common computer science technique called “hashing” to match individuals who existed in both sets. Facebook says the data would have been used only for research conducted by the medical community.
The project could have raised new concerns about the massive amount of data Facebook collects about its users, and how this data can be used in ways users never expected.
That issue has been in the spotlight after reports that Cambridge Analytica, a political research organization, improperly got a hold of detailed information about Facebook users without their permission. It then tried to use this data to target political ads to them.
Facebook said that as many as 87 million people’s data might have been shared this way. The company has recently announced new privacy policies and controls meant to restrict the type of data it collects and shares, and how that data can be used.
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. For instance, if Facebook could determine that an elderly patient doesn’t have many nearby close friends or much community support, the health system might decide to send over a nurse to check in after a major surgery.
Health systems are notoriously careful about sharing patient health information, in part because of state and federal patient privacy laws that are designed to ensure that people’s sensitive medical information doesn’t end up in the wrong hands.
To address these privacy laws and concerns, Facebook proposed to obscure personally identifiable information, such as names, in the data being shared by both sides.
However, the company proposed using a common cryptographic technique called hashing to match individuals who were in both data sets. That way, both parties would be able to tell when a specific set of Facebook data matched up with a specific set of patient data.
The issue of patient consent did not come up in the early discussions, one of the people said. Critics have attacked Facebook in the past for doing research on users without their permission.
Facebook has taken only tentative steps into the health sector thus far, such as its campaign to promote organ donation through the social network. It also has a growing “Facebook health” team based in New York that is pitching pharmaceutical companies to invest its ample ad budget into Facebook by targeting users who “liked” a health advocacy page, or fits a certain demographic profile.
