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:
"For
the first time in history, people are sharing information
about themselves online in ways that may help determine
how to improve their health. As part of its mission to
transform cardiovascular care and 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 in the prevention and treatment of heart disease—the
#1 cause of death in the world. This partnership is in the
very early phases as we work on both sides to ensure
privacy, transparency and 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 and federal patient
privacy laws that are designed to ensure that people's
sensitive medical information doesn't end up in the wrong
hands.
To
address these privacy laws and concerns, Facebook proposed
to obscure personally identifiable information, such as
names, in 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 way, both parties would be able to tell when a
specific set of Facebook data matched up with a specific set
of patient data.
The
issue of patient consent did not come up in the early
discussions, one of the people said. Critics have attacked
Facebook in 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 this health initiative would be
problematic if Facebook did not think through the privacy
implications.
"Consumers
wouldn't have assumed their data would be used in this way,"
said Aneesh Chopra, president of a health software company
specializing in patient data called CareJourney and the
former White House chief technology officer.
"If
Facebook moves ahead (with its plans), I would be wary of
efforts that repurpose user data without explicit consent."
When
asked about the plans, Facebook provided the following
statement:
"The
medical industry has long understood that there are
general health benefits to having a close-knit circle of
family and friends. But deeper research into this link is
needed to help medical professionals develop specific
treatment and intervention plans that take social
connection into account."
"With
this in mind, last year Facebook began discussions with
leading medical institutions, including the American
College of Cardiology and the Stanford University School
of Medicine, 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, and we have not
received, shared, or analyzed anyone's data."
"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 is used in our products and
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. It also has a growing "Facebook
health" team based in New York that
is 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.