Millions of Facebook (FB) users have joined groups to talk about health care issues ranging from rare disease diagnoses to chemotherapy side effects. Now, the technology giant is taking steps it hopes will encourage those conversations while affording users more privacy.

“There are a lot of people with sensitive questions [who] are not comfortable asking a question in a group where they have to tie their identity to that question,” said Hema Budaraju, the product management director for health at Facebook.

The company announced Tuesday that it will create a new type of community: health support groups. Once groups are designated as health support communities, users will be able to easily ask the administrators to post questions on their behalf.

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Not everyone is convinced the move is a milestone — or that it gets to the heart of privacy concerns around sharing health information on Facebook.

“That sounds, to me, a lot like managing people’s well-founded anxieties without actually making any structural changes,” said Kirsten Ostherr, a media scholar and digital health technology researcher at Rice University. Ostherr said the change doesn’t address broader concerns about how third parties can access and use sensitive user data, such as personal health information.

Facebook is facing continued criticism about how it protects users’ data, including information from users who joined closed groups.

Users have to submit requests to join closed Facebook groups, and only the current members of a closed group can see who else is in the group. But that wasn’t always the case.

In 2018, members of a closed group for women with the BRCA gene mutation discovered that people who weren’t in the group could access their names, email addresses, and participation in the group. That incident sparked a Federal Trade Commission complaint, filed earlier this year, which alleges that Facebook didn’t do enough to secure personal health information.

Despite the company’s subsequent decision to restrict access to closed groups, some advocates argue it still has to do more to protect sensitive information.

“People are really quite vulnerable when they’re facing health concerns. It’s the exploitation of that vulnerability by the platform and third parties that is most troubling,” Ostherr said.

House lawmakers sent a letter to Facebook in February questioning the company about whether closed group members are properly notified that “their personal health information may have been accessed by health insurance companies and online bullies, among others.”

“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,” lawmakers on the House Energy and Commerce Committee wrote.

Under the new system, members of a health support group won’t be able to tell who submitted a question when it’s posted by the administrator. But the administrator will be able to see who made the request, which means it’s not completely anonymous.

Ashley Greiner, a 38-year-old woman who was diagnosed with congestive heart failure in 2016, said the groups have provided a valuable way for patients to connect with each other about their conditions.

“It’s somewhere to vent. It’s somewhere to share your concerns. It’s somewhere to ask questions and get educated,” said Greiner, who formed a Facebook support group for other CHF patients.

Greiner was part of a pilot test for the new system and was identified by Facebook as someone who would be willing to be interviewed about the experience.

She said that she’s hopeful the new option for anonymity — which has already been rolled out in her support group — will help more members feel comfortable sharing their experiences. In particular, she said, she thinks the option will be useful for people who are embarrassed about their symptoms or who don’t like disclosing personal information on Facebook.

Ostherr said she would advise people who join Facebook groups to talk about health issues to avoid sharing lab test results and other identifiable health care data. She also said that people who connect with each other through Facebook health groups could move some of their conversations to other, more private platforms.

“People should try to get the benefit that they can [from the groups] with minimal exposure of personal information,” she said.

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  • Copying from the article : ” ….was identified by Facebook as someone who would be willing to be interviewed about the experience.” Identified how? Nothing is safe on Facebook, so those wanting to share medical (or other private) experiences need to seek alternative sharing sites that DO respect privacy. Skip any with advertising – select the ones you need to pay for.

  • Who would share medical details on Facebook ?? Of course there is no privacy. It is a business, makes boatloads of money from advertisers, and those get their info and targets from ….. Facebook. It most certainly is not a philantropical institution. It is a social media machine, that shares endlessly. So if you don’t want your info shared, don’t put it on Facebook. There are indeed much safer and much more private channels to share that sensitive info, if you want to share it. But it simply is not Facebook.

  • An interesting piece, Megan – I would have less than no interest in participating in such a group but you make clear that it can have some value. It’s a new approach to consider.

  • Great story. Do you know if these Facebook Groups will be existing patient-focused Groups, or will these be a new set of disease-focused Groups that Facebook creates and manages?

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