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.
“This work has not progressed past the planning phase, and we have not received, shared, or analyzed anyone’s data,” a Facebook spokesperson told CNBC.
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 that did work for Donald Trump, improperly got ahold of detailed information about Facebook users without their permission. It then tried to use this data to target political ads to them.
Facebook said on Wednesday that as many as 87 million people’s datamight 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.
Led out of Building 8
The exploratory effort to share medical-related data was led by an interventional cardiologist called Freddy Abnousi, who describes his role on LinkedIn as “leading top-secret projects.” It was under the purview of Regina Dugan, the head of Facebook’s “Building 8” experiment projects group, before she left in October 2017.
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.
The people declined to be named as they were asked to sign confidentiality agreements.
Facebook provided a quote from Cathleen Gates, the interim CEO of the American College of Cardiology, explaining the possible benefits of the plan: