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Chronicles

The story behind the story

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Sources: Facebook asked several US hospitals to share anonymized data about patients for a proposed research project, but plan is on hold amid privacy scandals

Christina Farr / CNBC :

CNBC Christina Farr

Context & Ripple Effects

In early 2018, at the height of the Cambridge Analytica fallout, CNBC reported that Facebook had approached several US hospitals about sharing anonymized patient data for a proposed research project — a deal that was put on hold as the privacy scandals mounted. The request itself was framed as public-interest research, but it landed while trust in Facebook's data handling was at its lowest point.

What makes this story worth revisiting is how the arc resolved: rather than reviving the formal hospital partnership, Facebook's subsequent health-data activity moved to indirect channels. A year later it launched a scheme letting patient-group admins post sensitive health questions anonymously, academics who were promised 2018 project data were still waiting on it by mid-2019 (with Facebook citing privacy fears for withholding parts of it), and by 2022 an analysis found [[a:979896|33 of the top 100 US hospitals had the Meta Pixel tracker sending prescription and condition details back to Facebook]].

First-order effects

  • The named hospitals faced an immediate choice between a marquee research partnership with Facebook and the reputational risk of sharing patient data during an active privacy scandal — and the hold meant no data flowed through the negotiated channel.
  • Academic collaborators tied to the project were left without the dataset they had been promised, a gap that persisted into 2019 when Facebook declined to hand over portions of it citing privacy concerns.

Second-order effects

  • With the front-door partnership stalled, Facebook's health-data access shifted to back channels — SDKs embedded in health apps (which New York later found the company curbed collecting from, while barely tracking which apps sent data) and trackers like Meta Pixel running on hospital websites — so the data kept arriving without any hospital signing a research agreement.
  • Hospitals and health publishers absorbed the compliance burden: the same institutions that declined a negotiated data-sharing deal were, in many cases, unknowingly sending patient-related data to Facebook via third-party trackers embedded in their own web properties.

Third-order effects

  • If the pattern holds, health institutions' data relationships with platforms get set by default tracking rather than explicit consent frameworks — pushing regulators toward policing SDKs and pixels (as New York's inquiry did) instead of reviewing research partnerships case by case.
  • The episode establishes a durable trust discount on platform-health collaborations: researchers and providers who might partner with Facebook on health data must assume the company will unilaterally withhold or reroute the data, making formal agreements less valuable than independent verification of what actually flows.

The trend: Platform access to health data is migrating from negotiated institutional partnerships toward ambient tracking — pixels, SDKs, and group features — with regulators and audits, not contracts, becoming the real constraint.