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May 2, 2019

Facebook, for first time, will allow anonymous posting in health support groups

Daily Briefing

    Following privacy criticisms, Facebook on Tuesday announced that it would create a new community of health support groups that will allow users to post questions anonymously.

    The 6 little-known ways Facebook is changing health care

    Facebook's troubled past with privacy

    According to Facebook co-founder, Chair, and CEO Mark Zuckerberg, the social media platform began emphasizing groups in 2017 to "give people the power to build community and bring the world closer together."

    While these groups cover almost every imaginable topic, a sizeable subset focus on health care conditions. For example, there are groups that cater to patients with diabetes, cancer, and rare diseases, as well as individuals dealing with substance use disorders.

    A number of these groups are "closed"—which means the public can find them, but only members can see their content—while others are "secret," which means they can only be found via invite. But they all require individuals to post under their user profiles.

    But in recent years Facebook has come under fire for the ways it uses and shares information posted in those groups. For example, in March 2018, Andrea Downing—a member of the BRCA Sisterhood, a Facebook group consisting of over 10,000 members who have the BRCA1 mutation that raises the risk of breast cancer—discovered a Google Chrome extension that allowed marketers to look through the membership lists of closed Facebook groups. Downing worked with a security researchers to submit the information to Facebook and send a cease-and-desist order to the extension's developers.

    That incident sparked a complaint to the Federal Trade Commission, which alleged that Facebook did not do enough to secure the private health information on its site, STAT News reports.

    In February, members of the House Energy and Commerce Committee sent a letter to Zuckerberg asking whether group members were properly notified that "their personal health information may have been accessed by health insurance companies and online bullies, among others." The lawmakers wrote, "Labeling these groups as closed or anonymous potentially misled Facebook users into joining these groups and revealing more personal information than they otherwise would have."

    Facebook announces new health support groups

    In light of the issues, Facebook on Tuesday announced it would create health support groups that for the first time will allow users to ask questions anonymously through the group's administrators, STAT News reports.

    Under the new groups, administrators will post questions submitted by members without indicating who asked the questions. As such, group members will be unable to tell who submitted questions posted in the groups. However, administrators will be able to see who submitted the questions before posting them.

    Hema Budaraju, a product management director for health at Facebook, said the company has been doing "extensive research" to understand the needs of patients on Facebook. "We believe that it's a good time for us to be even more responsible in building tools to better serve these audiences," she said, adding, "We'll be looking to learn more about this space."

    Ashley Greiner, a 38-year-old woman with congestive heart failure, was part of a pilot test of the new health support group system, and said she is optimistic that the new system will help users feel more comfortable sharing their experiences. "I have members who want to ask questions, and they don’t want to offend anyone, or they just don’t want a spouse or caregiver to see it," she said. Greiner continued, "Anonymous posting is a great step toward making support groups better."

    Some say changes won't solve privacy concerns

    But some observers have said the move does not go far enough to protect users' health information.

    Kirsten Ostherr, a media scholar and digital health technology researcher at Rice University, said the new groups do not address concerns about how third parties can access personal data posted in them. "That sounds, to me, a lot like managing people's well-founded anxieties without actually making any structural changes," she said.

    Ostherr advised that individuals who join a Facebook group to talk about their health problems not share lab results or any other identifiable health data. "People should try to get the benefit that they can [from the groups] with minimal exposure of personal information," she said (Owens, "Vitals," Axios, 5/1; Thielking, STAT News, 4/30; Farr, CNBC, 4/30).

    Learn more: The 6 little-known ways Facebook is changing health care

    In 2017, Facebook presented an ambitious plan to leading health care organizations aimed at connecting patients' health care data to their social media presences. Today, that's been put on pause. But is the company done in health care? Here are six reasons that may not be true.

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