Facebook Vaccine Information Groups Find Themselves in Moderation Gray Area
Three years ago, Kate Bilowitz, a real estate worker with an armchair curiosity about health misinformation, created a Facebook group for vaccine discourse. Vaccine Talk: An Evidence Based Discussion Forum was created as a good-faith space for conversations about vaccines. The group’s original tagline stated that it was “a forum for both pro- and anti-vaxxers,” but beneath the hood it relied on dozens of moderators and admins to keep the community free of false medical claims, eventually attracting 54,000 members.
“It’s one of the few places on Facebook where both sides, and people in the middle, can come together and discuss [their vaccine beliefs] and it’s gonna be civil,” Bilowitz told OneZero.
On Sunday, however, the group was named by CNN Business in a story about misleading vaccine information on Facebook. The story was later updated, and it no longer mentions Vaccine Talk. But the community has since changed its name to exclude the line “a forum for both pro- and anti-vaxxers.”
“I’m concerned that Facebook could misinterpret what we’re about,” Bilowitz said. That misinterpretation, she fears, could result in the shuttering of responsible forums where Facebook users can ask questions about vaccine science.
Since the start of vaccine distribution last December, OneZero has identified dozens of Facebook groups encompassing thousands of users dedicated to discussing the science of vaccines and people’s vaccine experiences. These groups span a spectrum of beliefs. At one end are communities like Vaccine Talk, which seek to empower members with evidence-based resources and provide a welcoming environment for people with fears and concerns about a subject they may know little about. At the other, staunch anti-vax groups and pages are actively mobilizing users into real-world acts of opposition.
“It’s one of the few places on Facebook where both sides, and people in the middle, can come together and discuss [their vaccine beliefs].”
Now, as the pandemic rages for a second year, telling the difference between these communities — and treating them accordingly — is an urgent challenge for Facebook. How does the platform combat vaccine-hostile communities while leaving room for groups and forums that could genuinely help people on the fence about vaccines? It’s unclear whether Facebook’s own vaccine guidelines are capable of navigating these nuances.
Conversations with several moderators in three groups suggest that Facebook’s guidelines offer limited instruction for how to internalize the company’s latest crackdown on anti-vax groups, while also providing a forum for people to ask questions about vaccines and receive science-based information. As such, groups are left to create their own rules.
“Vaccine-hesitant” is a demographic that, according to medical professionals and researchers of online misinformation, should be approached with dignity and compassion to address their fears about being vaccinated. Though Facebook has launched a renewed effort to reduce the influence of anti-vax communities on its platform, less attention has been paid to vaccine-hesitant groups where, theoretically, this demographic’s concerns can be heard and progress can be made.
“There is infrastructure that can be modified to create healthier communities on Facebook while recognizing that people are going to congregate somewhere, and these are conversations we need to be having,” Renée DiResta, research manager at the Stanford Internet Observatory who has studied medical misinformation, told OneZero. Historically, when it comes to moderation of pervasively problematic topics, “the general dynamic, regardless of the substance of the content, is that you can reduce the reach but you’re not going to reduce the demand.”
This ethos is reflected in the group Pregnant and Nursing Women — Covid-19 Vaccine. Since there were no specific vaccine trials designated for mothers, millions of women must now make the deeply personal choice of whether to get vaccinated before studies are available.
So Sara Nizzero, PhD, a medical researcher and expectant mother in Texas, created a Facebook group for pregnant and nursing women looking to discuss the Covid-19 vaccine. The private community now counts more than 2,000 members. Some of its users share personal testimonials — “Today we are a part of history. I just received my first dose of Moderna as a breastfeeding mom to this beautiful baby,” a member wrote — while others seek empathy that can be hard to come by in conversations about vaccines. One mother described trepidation about getting the shots — “I feel like I’m in a now-or-never situation but I’m not ready for the ‘now’ part” — and was met by understanding from people in similar situations.
“As I considered the vaccine for myself, I realized that, despite me working in this field, it was still so difficult to make this decision,” Nizzero told OneZero, adding that she did receive the vaccine in December. “But there’s a lot of knowledge that can help. I felt like we really needed to do something for those who don’t have access to this knowledge or who cannot distinguish evidence-based information from conspiracy theory.”
Boosting confidence in the efficacy of vaccines is critical to ongoing coronavirus response efforts. Though vaccine acceptance is rising in the United States, with more than 40% of American adults now saying they’ll receive a vaccine when it becomes free and available to them (compared to 34% in December), it’s still a pressing concern. Globally, “only 63% of respondents across 23 countries will accept a vaccine… well below the 75% minimum estimate public health experts have recommended for a population to reach ‘herd immunity,” the Johns Hopkins Center for Communication Programs suggested in a survey released last month.
The reasons for vaccine hesitancy can be complex and systemic. Legacies of medical racism committed against Black and Indigenous communities, for example, can contribute to lower vaccination rates. A lack of health care access or trusted medical information have also been proposed as drivers of vaccine hesitancy in some urban and rural communities.
“Vaccine-hesitant” is a demographic that, according to medical professionals and researchers of online misinformation, should be approached with dignity and compassion.
“People do feel misheard or not heard at all in the health care system,” Kolina Koltai, PhD, a postdoctoral fellow at the University of Washington’s Center for an Informed Public who researches vaccine dissenters online, told OneZero. “Often, people go online instead of talking to their doctor because of the cost of health care in this country.”
Whether Facebook is prepared or not, its platform has become the terminus for vaccine discourse — pro, against, and unsure — in a time of social distancing. And in the absence of policies that directly address how vaccine hesitancy should be treated, the monumental responsibility has fallen on moderators of Facebook groups and pages. None of the groups OneZero spoke to has been suspended or deplatformed by Facebook as a result of its vaccine guidelines, but Bilowitz worries that a primarily algorithmic approach to moderation can unintentionally target harmless content. Previously, posts to Vaccine Content have been flagged for containing “PV,” an abbreviation meaning “pro-vaccine” in one context, but having sexual connotations in another.
“I’m not envious of Facebook’s position of how to handle that,” Koltai added.
“Empowerment of moderators is where Facebook lags quite a bit,” DiResta said.
In addition to helping mothers find solace in their shared experience, Nizzero’s group, which she runs with six other moderators and admins, can be a turning point for people on the fence about the Covid-19 vaccine. People attempting to use the group to spread anti-vax propaganda, conspiracy theories, or non-evidence-based information are “kicked out very fast,” Nizzero said. But for members expressing vaccine hesitancy, “when someone is on the fence and you provide evidence, it’s usually very easy for them to go in the direction of science. Some still decide to wait and we respect and protect their choice within the group.”
In lieu of professional platform moderation training, the team drafted protocols for keeping members informed about current coronavirus data — while never suggesting they do one thing or another. (“The goal is to provide information that is evidence-based. We stay away from medical advice and we always encourage members to go to their doctor for medical advice and recommendations,” she added.) Some moderators are more focused on addressing anti-vax propaganda, for example. Nizzero herself, a medical researcher who stated that “half of what we do is read papers,” has taken on the task of parsing medical studies into ordinary terms. All of this accounts for roughly an hour of work per day, per person.
Other Facebook groups with less medical expertise have also waded into the vaccine hesitancy space and aim to course-correct misinformation spreading across the platform.
Karen, a Facebook user in Texas who asked that OneZero only use her first name, created the Covid Vaccine Discussion Group last December, wanting to make room for people to share their vaccination experiences. The private group counts more than 1,600 members, and is run by a team of six moderators and admins.
“We have a zero-tolerance rule for anyone posting false information or pseudoscience,” Karen told OneZero. “We also want to make sure it’s shared experiences and scientific information, and that no one is giving anyone else medical advice. If we see anyone asking for what we think is medical advice, we tell them to call their doctor.”
Members share firsthand accounts of their vaccination experiences — “First dose, nothing but a sore arm”; “I broke out in hives on my extremities” — though vaccine side effects remain a somewhat taboo subject.
Firsthand vaccination accounts represent a uniquely challenging moderation hurdle for Facebook. “Vaccine stories fall perfectly into that gray area because if someone posts a video about their mom and her symptoms, is that considered misinformation?” Koltai asked. “The danger is: At what point is it too much moderation? If no one’s able to talk about vaccines, that’s too extreme, because some people can have legitimate vaccine injury stories.”
In its coronavirus vaccine guidelines, Facebook says it may remove “claims about the safety or serious side effects of Covid-19 vaccines,” including false claims that the vaccine causes autism or changes people’s DNA, but it adds nothing to address the complexities of reported vaccine side effects.
Though Covid-19 vaccines have proven to be overwhelmingly safe, some reactions are normal and expected. According to the Centers for Disease Control and Prevention (CDC), common reactions to both the Moderna and Pfizer vaccines, which are authorized in the United States, include pain, swelling, and redness in the arm that received the injection and chills, tiredness, and headache throughout the body. These are expected and usually subside within a few days. Some people experience non-severe allergic reactions like hives. In January, the CDC announced “rare anaphylactic reactions in a small number of people” who received it, amounting to “a rate of 2.1 cases per million doses of the Moderna vaccine and 6.2 cases per million doses of the Pfizer,” STAT reported.
“My goal here was for anyone hesitant about getting the vaccine to be able to find the real science behind it, and if anyone has a side effect they can look and see others who have had it too, how long it lasted, etc., and be reassured that others have experienced the same thing,” Karen added. “That’s why it’s so important to keep the false information out.”
Each moderator and admin spends roughly two hours per day reviewing posts and comments, and checking that sources derive from peer-reviewed journals, authoritative news sources, or legitimate health agencies.
Facebook provides admins with few tools for scaling up their moderation efforts, including a module demonstrated to OneZero that allows them to automatically flag keywords. The team has listed “untested,” “Bill Gates,” and “Trump” as flagged keywords, for example. The tool allows moderators to track and delete problematic content more easily.
“We don’t want to be deplatformed for false information in the group.”
“We also scan every profile’s public posts and publicly displayed information before allowing them in,” said Angie, another admin of the Covid Vaccine Discussion Group who also requested that OneZero only use her first name. “Some [users] are more notorious. One guy recently snuck in — well he was in another group I am in — and was outed for selling counterfeit masks and home Covid-19 tests.”
Even for modest-sized vaccine groups, moderation is a formal responsibility — and failure to moderate the group to Facebook’s standards can lead to the spread of dangerous misinformation or harmful personal consequences. Facebook stresses the importance of admins in policing private groups, and notes that out-of-control abuse can result in measures such as admins having to review and approve every single post. Some groups preemptively choose to approve posts, but the fact remains that Facebook has shouldered much of this burden onto unpaid, untrained users with only a limited set of tools at their disposal.
“Every post that gets submitted we approve or reject,” said Bilowitz. “We don’t approve anything already flagged by Facebook. If it gets flagged later, we delete it. We don’t want to be deplatformed for false information in the group.”
Bilowitz said that medical professionals also contribute to Vaccine Talk, adding their knowledge to group discussions. One person is an expert on the blood-brain barrier, while another writes vaccine inserts and can translate esoteric jargon into layman’s terms, Karen claimed.
Though all of the group’s moderators and admins are pro-vaccine, she added, they never interject with their personal beliefs.
“We feel the group is pretty distributed the way real life is,” Bilowitz said. “A majority are pro, followed by on the fence, followed by anti as the minority. We ask for people’s stance when they join so we can see if they’re misrepresenting themselves in the group, and we keep track of people who change their stances.”
“There’s a difference between anti-vaccine and vaccine-hesitant, and understanding the reasons behind the hesitancy and understanding them empathetically,” said DiResta. “Engaging with them and addressing their concerns is a really, really important thing for health advocacy.”
Facebook did not immediately respond to OneZero’s request for comment about the moderation of “gray area” vaccine topics.
Both Nizzero and Bilowitz say that some Facebook product changes would make moderating their groups easier. For one, they wish that Facebook would verify the credentials of groups and users presenting themselves as medical professionals. Nizzero said she would also appreciate Facebook removing harder-to-address content such as screenshots of vaccine misinformation that are easy to replicate in avoidance of the platform’s policies.
In the meantime, Nizzero and other group admins are doing their best to keep their forums science-based but empathetic.
In a Monday announcement to the group, Nizzero addressed a viral claim that a woman had miscarried after receiving the coronavirus vaccine. The narrative has since been debunked as anti-vax propaganda, but the group had received numerous submissions about the trending story. “The story was based on someone’s Twitter account that was screenshotted and mixed up with the picture from another person,” Nizzero told OneZero. “To our knowledge neither of them was aware or gave consent and it appears the story was fabricated to make it look like a doctor miscarried after receiving the vaccine.”
“First of all we should point out that this story seems to be the only one going around where a miscarriage happens a few days after one of the vaccines, and there has been no causal connection made to the vaccine,” Nizzero wrote to the group. “When looking at stories like this, we should remember that we do clinical studies with the exact purpose to clearly highlight what is evidence and separate it from anecdotes and coincidences. This is what allows us to have a rational view of causality and make informed decisions.”