April 6, 2018

Why Facebook wanted patient data—and then backed down (for now)

Daily Briefing

    Facebook last year sought anonymized patient data from several top U.S. hospitals and medical groups for a proposed research project intended to help health care organizations identify patients who might need additional care, but paused the project amid renewed concerns over how Facebook and other companies leverage user data, CNBC reports. 

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    Facebook's data-sharing policies have been under renewed scrutiny since news emerged last month that Cambridge Analytica, a political research organization, had collected Facebook user data without user consent and used it for political purposes.

    Facebook seeks patient data

    According to two sources familiar with the project, Facebook in its discussions with hospitals proposed using a hospital's patient data—including age, diagnosis, and number of medications and hospitalizations—and matching that data with information from users' profiles—such as marital status, number of children, primary language, community involvement—to help the provider identify patients who may need additional support and care. The sources, CNBC reports, asked to remain anonymous because they had signed confidentiality agreements.

    Facebook proposed that hospitals omit personally identifiable information, such as names, and indicated that it would match patients in the hospital data set with user profiles via a cryptographic technique called hashing. Facebook said the data collected under the proposed research project would have been used solely to conduct research for the medical community. But one source told CNBC that Facebook did not discuss patient consent in the early discussions—an issue Facebook has faced criticism for in the past.

    According to CNBC, Freddy Abnousi, an interventional cardiologist, led the research project out of Facebook's experimental projects group, "Building 8." The project was set to initially focus on cardiovascular health, CNBC reports.

    Facebook in a statement to CNBC confirmed that it had spoken with "leading medical institutions, including the American College of Cardiology and the Stanford University School of Medicine." However, Facebook said it halted the project last month "to focus on other important work, including doing a better job of protecting people's data and being clearer with them about how that data is used in our products and services."

    A Facebook spokesperson said the proposal "has not progressed past the planning phase, and [Facebook has] not received, shared, or analyzed anyone's data," CNBC reports.

    News highlights social media's growing role in health care

    According to CNBC, health care organizations are careful about how they share patient health data, in part because federal and state laws are designed to prevent the spread of sensitive medical information.

    Cathleen Gates, the interim CEO of the American College of Cardiology, has said the proposed project could "further scientific research on the ways social media can aid in the prevention and treatment of heart disease—the [No.] 1 cause of death in the world," CNBC reports.

    But health policy experts said the proposed project would pose concerns, particularly if Facebook did not consider user privacy, CNBC reports

    Aneesh Chopra, president of CareJourney, a health software company, and the former White House chief technology officer, said, "If Facebook moves ahead (with its plans), I would be wary of efforts that repurpose user data without explicit consent," because "[c]onsumers wouldn't have assumed their data would be used in this way" (Farr, CNBC, 4/5; Baker, "Vitals," Axios, 4/6; Kastrenakes, The Verge, 4/5).

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