Facebook's Reach: Data-Sharing Plans With ACC Shelved for Now

April 11, 2018

Plans for the American College of Cardiology (ACC) and other medical institutions to share patient-level data with Facebook have been placed on hold, at least for now, at a time when the social-media behemoth is facing scrutiny for failing to control third-party access to its subscribers' information.

Last year, Facebook reached out to the ACC, Stanford University School of Medicine, and other organizations with a proposal to share the anonymized patient information, including clinical data and prescribing records, according to CNBC.com, which first reported the story, widely picked up by other news outlets.

The idea was to cross-match the patient data with the voluminous, far-reaching subscriber information Facebook routinely collects and monetizes to "help the hospitals figure out which patients might need special care or treatment," the CNBC.com report said.

In a statement to theheart.org | Medscape Cardiology, Facebook acknowledged the company had in fact begun discussions with ACC and Stanford, "to explore whether scientific research using anonymized Facebook data could help the medical community advance our understanding in this area. This work has not progressed past the planning phase," the statement adds, "and we have not received, shared, or analyzed anyone's data."

The project may be intended to explore whether meshing the two sources of data can shed light on the health benefits of community and social interaction in the more conventional sense, the Facebook statement seems to imply.

"The medical industry has long understood that there are general health benefits to having a close-knit circle of family and friends," the statement said. "But deeper research into this link is needed to help medical professionals develop specific treatment and intervention plans that take social connection into account."

A statement from ACC interim CEO Cathy Gates confirmed that the college "has been engaged in discussions with Facebook around the use of anonymized Facebook data, coupled with anonymized ACC data, to further scientific research on the ways social media can aid in the prevention and treatment of heart disease."

The point that no data have been shared between any parties to date was also made in a separate statement from ACC president C Michael Valentine, MD. The college considered the "potential scientific collaboration with Facebook" as it would any form of research, Valentine said, with efforts to ensure that it could be conducted in compliance with Health Insurance Portability and Accountability Act (HIPAA) rules and other regulations meant to protect the rights of participants.

Such concerns may have a lot to do with why the project is on hold, as the social-media company is currently facing a backlash from some quarters of the public and legislators over how it uses the vast amount of information it collects on Facebook subscribers.

"Last month we decided that we should pause these discussions so we can focus on other important work, including doing a better job of protecting people's data and being clearer with them about how that data are used in our products and services," the Facebook statement concludes.

Facebook CEO Mark Zuckerberg is testifying this week before Congress about the possibility that breaches of Facebook data played a role in improper interference with the US election in 2016, and the Brexit vote in the UK, and what strategies can be developed to better protect the public.

"That issue has been in the spotlight after reports that Cambridge Analytica, a political research organization that did work for Donald Trump, improperly got a hold of detailed information about Facebook users without their permission," the CNBC.com report notes. "It then tried to use these data to target political ads to them."

Follow Steve Stiles on Twitter: @SteveStiles2. For more from theheart.org | Medscape Cardiology, follow us on Twitter and Facebook.

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