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.” the idea 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 the idea along with one who is actually familiar with the project, was to combine what a health system knows about its patients (such as: person has heart disease, is actually age 50, takes 2 medications along with made 3 trips to the hospital that will year) with what Facebook knows (such as: user is actually 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 likely then figure out if that will combined information could improve patient care, initially having a focus on cardiovascular health. For instance, if Facebook could determine that will 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 by Cathleen Gates, the interim CEO of the American College of Cardiology, explaining the possible benefits of the plan:
“For the very first time in history, people are sharing information about themselves online in ways that will may help determine how to improve their health. As part of its mission to transform cardiovascular care along with improve heart health, the American College of Cardiology 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 from the prevention along with treatment of heart disease—the #1 cause of death from the globe. that will partnership is actually from the very early phases as we work on both sides to ensure privacy, transparency along with scientific rigor. No data has been shared between any parties.”
Health systems are notoriously careful about sharing patient health information, in part because of state along with federal patient privacy laws that will are designed to ensure that will people’s sensitive medical information doesn’t end up from the wrong hands.
To address these privacy laws along with concerns, Facebook proposed to obscure personally identifiable information, such as names, from 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 will way, both parties would likely be able to tell when a specific set of Facebook data matched up having a specific set of patient data.
The issue of patient consent did not come up from the early discussions, one of the people said. Critics have attacked Facebook from the past for doing research on users without their permission. Notably, in 2014, Facebook manipulated hundreds of thousands of people’s news feeds to study whether certain types of content made people happier or sadder. Facebook later apologized for the study.
Health policy experts say that will that will health initiative would likely be problematic if Facebook did not think through the privacy implications.
“Consumers wouldn’t have assumed their data would likely be used in that will way,” said Aneesh Chopra, president of a health software company specializing in patient data called CareJourney along with the former White House chief technology officer.
“If Facebook moves ahead (with its plans), I would likely be wary of efforts that will repurpose user data without explicit consent.”
When asked about the plans, Facebook provided the following statement:
“The medical industry has long understood that will there are general health benefits to having a close-knit circle of family along with friends. however deeper research into that will link is actually needed to help medical professionals develop specific treatment along with intervention plans that will take social connection into account.”
“With that will in mind, last year Facebook began discussions with leading medical institutions, including the American College of Cardiology along with the Stanford University School of Medicine, to explore whether scientific research using anonymized Facebook data could help the medical community advance our understanding in that will area. that will work has not progressed past the planning phase, along with we have not received, shared, or analyzed anyone’s data.”
“Last month we decided that will we should pause these discussions so we can focus on additional important work, including doing a better job of protecting people’s data along with being clearer with them about how that will data is actually used in our products along with services.”
Facebook has taken only tentative steps into the health sector thus far, such as its campaign to promote organ donation through the social network. the idea also features a growing “Facebook health” team based in brand-new York that will is actually 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.