Q&A with Voices For Vaccines Director, featured in new movie “Shot in the Arm”

Consequential compassion is one of The Task Force for Global Health’s core values. It involves being aware of the causes of human suffering, understanding them, and engaging in informed decisions to alleviate that suffering.

The Task Force’s Voices for Vaccines program embodies this value in its work with families. Voices for Vaccines protects people from vaccine-preventable diseases by fostering positive conversations that empower families to make informed decisions about vaccination for them and their communities.

By supporting peer-to-peer discussions about vaccines, grounded in compassion, that present clear facts about the risks of disease and the safety of vaccines, Voices for Vaccines seeks to bolster confidence in the vaccine science that has prevented millions of childhood deaths and can  prevent millions more.

Voices for Vaccines Director Karen Ernst spoke to us about the program’s approach and the 2023 documentary “Shot In The Arm,” in which she is featured.The film places vaccine hesitancy in both the context of history and of the COVID-19 pandemic. Among other public health leaders, it features Dr. Anthony Fauci, former Director of the National Institute of Allergy and Infectious Diseases; Dr. Peter Hotez, Dean of the National School of Tropical Medicine at Baylor College of Medicine; Dr. Paul Offit, Director of the Vaccine Education Center and professor of pediatrics in the Division of Infectious Diseases at Children’s Hospital of Philadelphia.

Voices for Vaccines Director Karen Ernst featured in "Shot In The Arm" documentary

How did Voices for Vaccines get started?

It started in 2008 as a response to the growing anti-vaccine movement. At the time, when public health workers, government agencies or academics wanted to include a parent’s voice in discussions about vaccines, the parents they talked to were associated with very large and powerful anti-vaccine groups. Those parents would often say that they had millions of parents behind them.

Voices for Vaccines began with the understanding that a silent majority of parents stand behind vaccines, want vaccines, and believe in vaccines. Parents needed a place to go for information and support – a place that wasn’t the anti-vaccine movement. The response was the brainchild of four doctors, Alan Hinman, Consulting Advisor to The Task Force’s Center for Vaccine Equity, Stanley Plotkin, former Chief in the Division of Infectious Diseases at The Children’s Hospital of Philadelphia, Deborah Wexler, founder and past Executive Director of Immunization Action Coalition, and Paul Offit, Director of the Vaccine Education Center and Professor of Pediatrics in the Division of Infectious Diseases at Children’s Hospital of Philadelphia, who said there should be a voice for vaccines.

I joined in 2013, and since then we’ve shifted how we talk about the issues. Instead of just parents, we talk about families now. Vaccination is a lifelong necessity, so it’s not just parents making decisions. It’s entire families – grandmas, aunties, sometimes even adult children making decisions about vaccines for elderly parents. It’s really important we talk about families now.

Social media existed when Voices for Vaccines started, but conversations about vaccines hadn’t fully migrated to social media yet. How has the popularity of social media networks altered conversations about vaccines and vaccination?

Social media did a few things. First of all, it gave people who have ideas not rooted in science the mistaken impression that there were a lot more people in the world like them than there really were because on social media you can easily find like-minded folks. There’s a plus side to being able to find people like you, of course. If you’re a person suffering from a rare disease, it’s nice to be able to find an online community that you might not be able to find in your town.

At the same time, if you’re the person that doesn’t vaccinate your kid, you go online and all of a sudden you can find 500 other people who are saying the same things as you. It can really embolden your position.

Another difference is that instead of people hearing stories from the media, they hear from people sharing a story that’s “coming from a friend of mine.” Scary stories about vaccines that come from friends or friends of friends can be much stickier and more believable than fact-checked stories from newspapers and magazines, even if they’re not true. With social media, the scale at which misinformation could be spread is enormous. As this started happening, there were those of us who were trying to reach out to social media companies and saying, ‘This is a problem. You’re making things worse. You’re endangering public health.’ And they said ‘No. Freedom of speech. Everyone gets to say what they want.’

Facts are easier to find than they’ve ever been. So why hasn’t the easy availability of correct, truthful information about vaccines counterbalanced the misinformation and disinformation?

The trouble with the truth is that it’s nuanced and complicated. That’s a boon to misinformers, whose lies are usually simple and easy to understand.

In a nutshell, if you ask a scientist, ‘Do vaccines cause autism?’ They’ll say ‘Well, to date, there’s no evidence that connects vaccines and autism. What we do know about the genetic components of autism is . . .’ That approach is accurate but not particularly compelling to a layperson. If you ask an anti-vaxxer the same question, they’ll say, ‘My child got vaccinated. And then the light left his eyes.’ The problem is that the truth is just not sexy enough.

Is the way that scientists communicate part of the problem?

Yes. Voices for Vaccines exists because we are not scientists. We are families communicating to other families at the family level, with information grounded in science.

We’ll tell you vaccines don’t cause autism. Because that’s the nub of it. And then we’ll tell you, if you’d like, how we know vaccines don’t cause autism. And then we’ll talk to you about the brain. And if you want we’ll tell you everything in the brain that we study, in autistic people and neurotypical people, and explain how the brain development that happens in autistic brains all happens before birth, and vaccines don’t time travel.

That’s it. That’s our message. Does it go into all the scientific nuances? No. But is it accurate? Yes. We really break things down and explain to people what they need to know, how we know that’s the truth, how we know what we’re saying is credible, and how we know we can trust and rely on and believe in these things. It’s really important that people who don’t think about vaccines every single day can get the truth quickly, simply and understandably.

What do we need to do in public health communications that we’re not doing?

We need to empower people. And that means speaking to them in a way that’s not condescending, not talking down to them, not filled with the presumption that they can’t understand the science if we communicate it in a way that’s not needlessly complex. We don’t need to give all the caveats. We just need to tell the truth as plainly as we can. And we need to do it in a way that recognizes and appreciates their own personal experiences. We also need to recognize people might decide not to vaccinate. In the space of 10 minutes of talking to someone, you might not convince them. But we can talk to people with enough empathy, listen actively, and continue to have the conversation.

Pediatricians have been dealing with vaccine-hesitant parents for years. They’ve been using this method for years. And the next well-child check, the pediatrician will say, “I want to touch on vaccines again, talk about your child being unvaccinated, and talk about how we can help your child to keep them free of these preventable diseases.”

Empowering people, not being condescending, and using as much empathy as you can. That’s not always easy to do when people are being insulting or completely dismissing your life’s work. You have to remember that people have their own beliefs and that doesn’t have to reflect on you or who you believe you are as a human being.

Along with trying to simplify and humanize the way you communicate, you also seem more comfortable bringing humor and stories into your work than most health scientists who do public communications.

Absolutely. I think my secret is that I’m not a scientist. Our thing from the beginning was always that people understand best through stories. And so we really try to weave in some storytelling as well. Our blog has all of our stories. I try to make our podcast feel like a story. The documentary film is a story.

When Voices for Vaccines first started, we got some pushback about sharing stories. ‘Those are just anecdotes. You need facts!’ But they’re not just anecdotes if they’re supported by science. If we can support everything that happened with legitimate scientific explanations, it’s not just an anecdote. It’s a story of how science works.

We don’t get pushback anymore.

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