Online crowds can be either snappy and insensitive or welcoming and informative. An essential ingredient for the latter is people like Kate Bilowitz.
Bilowitz is the co-founder of a Facebook group called Vaccine Talk, which describes itself as an “evidence-based discussion forum” for people with different beliefs about vaccination to better understand each other.
You can imagine frenzied shout festivals, but I’ve been watching Vaccine Talk since reading about the group in the Washington Post and I’ve seen mostly empathic, civil, and nuanced discussions. I got tears in my eyes from reading the compassionate responses to someone concerned about COVID vaccinations harming a loved one who is recovering from cancer.
Vaccine talk isn’t perfect and the group’s work is exhausting. Facebook recognizes that Vaccine Talk is the kind of group it wants on its website, 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, the Nextdoor neighborhood meeting, the Reddit parent forum, or the Discord book group.
In my ideal world, the best online community hosts would be as famous as Mark Zuckerberg. Think of this article as a step in getting them more attention.
Vaccine talk is time consuming. Bilowitz, who is a mom and works in the real estate industry, said she spent about 10 to 15 hours a week on the Facebook group. I asked why she takes so much time to volunteer where she is occasionally yelled at by strangers.
“It’s extremely rewarding when people tell us that the group helped them,” said Bilowitz. “We’re not here to preach to people, but honestly, when people hesitate about vaccines and find information that will help them be confident in their decision, that’s honestly the main reason we do it.”
The irony of building great online communities is that when they work, they can appear effortless. They definitely are not. Bilowitz said Vaccine Talk overseers, like others who run online groups, worked hard to create a healthy culture and develop and enforce codes of conduct.
Vaccine Talk started more than four years ago and has mainly focused on vaccines for children like measles. The original idea was to be a place for all sorts of things.
“That didn’t work,” said Bilowitz. “It was not a civil discussion forum.”
Many people – especially those who find themselves in the middle of strongly approving or disapproving views – have turned themselves off.
Now rules require people to be respectful, and the group gives tips on how to effectively back up claims with evidence. “Complaining excessively” about the group or how it is run is taboo. Nearly 30 moderators, spread across multiple time zones, are closely monitoring the comments and approving newcomers who wish to join the group of around 77,000 members.
Bilowitz knows some people feel choked by the guard rails of vaccine talk, but she believes they are essential to productive conversations.
The dangers of misinformation about vaccines make the work of the group and that of Facebook difficult. To counter any misinformation on its website, Facebook has set rules against posting information about vaccines that is believed to be incorrect by fact-checking groups or health authorities. However, this poses a challenge for groups like Vaccine Talk, where people sometimes post misinformation for help in debunking it – something that is allowed in the rules of Facebook.
Bilowitz said Facebook turned off Vaccine Talk for several hours twice this year as a punishment for violating the company’s misinformation policy. Facebook told me it was aware the group was closed once and said it was a mistake.
A Facebook spokesperson, Leonard Lam, told me that “the company can do more to support well-meaning communities like Vaccine Talk”.