Gatherings of humans on the internet can be either snarky and insensitive or welcoming and informative. One essential ingredient for the latter is people like Kate Bilowitz.
Bilowitz is a co-founder of a Facebook group called Vaccine Talk, which describes itself as an “evidence-based discussion forum” for people with varying beliefs about vaccinations to better understand one another.
You might imagine raging shout fests, but I’ve been watching Vaccine Talk since I read about the group in The Washington Post, and I’ve mostly seen discussions that are empathetic, civil and nuanced. I’ve gotten teary reading the compassionate replies to someone worried about COVID vaccinations harming a loved one recovering from cancer.
Vaccine Talk isn’t perfect, and the group’s work is fraught. Facebook acknowledges that Vaccine Talk is the kind of group that it wants on its site, but Bilowitz told me that the group’s overseers are constantly worried about being shut down. More on that in a minute.
Vaccine Talk shows that our online experiences are shaped by the people who run our favorite Facebook group, Nextdoor neighborhood gathering, Reddit parenting forum or Discord book group.
In my ideal world, the best online community hosts would be as famous as Mark Zuckerberg. Consider this article one step to bring them more notice.
Vaccine Talk is a time-consuming labor. Bilowitz, who is a parent and works in real estate, said that she spent about 10 to 15 hours a week on the Facebook group. I asked why she devoted so much time to a volunteer role in which she’s occasionally yelled at by strangers.
“It is extremely rewarding when people tell us that the group helped them,” Bilowitz said. “We’re not here to preach at people, but when people are hesitant about vaccines and they find information that helps them become confident in their decision — honestly, that is the No. 1 reason why we do this.”
The irony of building great online communities is that if they’re working, they can seem effortless. They definitely are not. Bilowitz said the overseers of Vaccine Talk, like others who run online groups, worked hard to forge a healthy culture and design and enforce codes of conduct.
Vaccine Talk started more than four years ago and focused mostly on childhood vaccines like measles. The initial idea was to be a place for anything-goes conversations.
“That did not work,” Bilowitz said. “It was not a civil discussion forum.”
Many people — particularly those in the vast middle between strongly pro- or anti-vaccine views — tuned out.
Now, rules require people to be respectful, and the group offers tips on how to effectively back up claims with evidence. “Excessive complaining” about the group or how it’s run is off-limits. Nearly 30 moderators scattered across multiple time zones keep a close watch on the comments and approve newcomers who want to join the group, which has about 77,000 members.
Bilowitz knows that some people feel stifled by Vaccine Talk’s guardrails, but she considers them essential for productive conversation.
The dangers of false information about vaccines complicate the group’s work and Facebook’s. To try to counter misinformation on its site, Facebook has rules against posting information on vaccines that fact-checking groups or health authorities consider false. But this poses a challenge to groups like Vaccine Talk, where people may sometimes post misinformation to get help debunking it — something that is allowed in Facebook’s rules.
Bilowitz said that twice this year, Facebook disabled Vaccine Talk for several hours as a punishment for violating the company’s policies against misinformation. Facebook told me it was aware that the group was taken down once and said it was a mistake.
A Facebook spokesperson, Leonard Lam, told me that there was “more the company can do to support well-intentioned communities like Vaccine Talk.”