Florence Rosen, a newly minted grandma and semi-retired pediatrician, recently added a new line to her resume: social media influencer.
Rosen, who often films herself with her baby grandson snuggled against her shoulder, is among a contingent of “TikTok Docs” — and nurses — who have taken to the fast-growing social media video platform to try to talk Americans down from the vaccine-fearing ledge.
“Do I think this vaccine is great? I do,”
she exclaims to her more than 158,000 followers. It’s an “absolutely wonderful thing,” and yes, she says, she’s gotten it herself.
But she’s not talking about the Covid vaccine. She’s praising a new shot against RSV.
RSV, or respiratory syncytial virus, usually hits in fall and winter. It’s mild for most people but lethal for some — especially babies and older people.
In a typical year, according to the CDC, as many as 80,000 children under age 5 are hospitalized, and between 100 and 300 kids die. For those 65 and over, there are up to 160,000 hospitalizations a year, and 6,000 to 10,000 deaths.
But ahead of this RSV season, for the first time ever, immunization was finally approved for the most vulnerable groups of Americans, young and old. It was also recommended for those late in pregnancy, which would protect infants from birth.
Would people get the jab? As this RSV season winds down, the answer is that by and large, they did not.
The latest data from the CDC shows that only
16 percent of eligible pregnant people got vaccinated. Among the over 60 population,
it was just over one in five. And among babies and eligible young children, the uptake was “low,”
the CDC said.
Four years after Covid hit and fueled growing vaccine hesitancy, the rollout of the RSV vaccine this fall and winter offered a case study unfolding in real time. At issue was whether the public health and medical communities had acquired the skills, speed and agility needed to counter malicious misinformation before it took hold in the public’s mind.
A series of organizations and strategies sprang up, both online and off, to debunk misinformation or “prebunk” it or tackle it in some other way. The action has not just been on TikTok but on WhatsApp, Google and in local communities across the country. But it hasn’t been enough to rebuild trust among an increasingly skeptical nation, particularly on a new vaccine against an old disease.
“If the question is, is the public health community better prepared than it was three years ago? I can answer yes,” said Ashish Jha, back at his post as dean of Brown University’s School of Public Health after serving for a year as the Biden administration’s Covid response coordinator.
But, Jha added, doctors, nurses, public health officers and government agencies like the Centers for Disease Control, are operating in a challenging environment where too many downplay the winter respiratory season. These “minimizers” don’t acknowledge just how lethal such diseases, including RSV, can be for the high-risk population, adding, “It’s been very hard to break through that wall of bad information.”
The science of countering misinformation is still young.
All sorts of strategies that would seem to be potent turn out not to persuade people — or they do, but the effect is ephemeral, with people reverting to their original false beliefs
in as little as a week.
Still, health organizations have begun to mobilize since the tidal wave of Covid vaccine misinformation undermined demand for the shots and drove broader suspicion toward all vaccines, including routine childhood immunization for diseases like measles. But while clinicians and health groups are more alert to the threats, much of the population is so distrustful of public health and medicine — inside or outside of government — that any assertions of safety immediately get sucked into the conspiracy vortex.
The attack against RSV immunization during this first season wasn’t at Covid vaccine proportions, but it is out there.
“Despite 12 Deaths During Clinical Trials, CDC Signs Off on RSV Shots for Newborns,” read an alert from the Children’s Health Defense, the anti-vaccine group founded by independent presidential candidate Robert F. Kennedy Jr. In fact,
none of those deaths were caused by the shots, and there is ample data about their safety, including during pregnancy.
That didn’t stop another vaccine critic physician named Peter McCullough from urging his 979,500 followers on X (the site formerly known as Twitter) not to get vaccinated. “RSV in infancy easy to treat with nebulizers,” he claimed. And there were others like him on various social media platforms.
Many people have been seeking out information on RSV, according to the
Public Health Communications Collaborative, which was formed by the CDC Foundation, the de Beaumont Foundation and Trust for America’s Health in 2020. The organization, which brought in additional partners, works to provide accurate and effective messaging to the public health community and tracks online trends. It has found that when people search online for information on RSV, they see both facts and false claims. And for many people, after the last few years of competing online claims, it can be hard to figure out which is which.
In one major victory for accuracy and the public health world, Google followed guidance from experts convened under the National Academy of Medicine and the World Health Organization. Those experts outlined how tech platforms can identify credible sources of health information that can be elevated online. It’s not that nothing wrong or nefarious about RSV or any other health topic will ever get through Google search or YouTube, but these practices may make it less pervasive. For instance, if you google “RSV,” the first items that appear on the screen come from sources like the CDC, the Mayo Clinic, the American Lung Association — not from some self-appointed vaccine “expert” posting jeremiads about fictitious vaccine hazards from his basement.
“What we did was give [Google] a rubric and a blueprint to help them justify elevating credible sources,” said Antonia Villarruel, the dean of the University of Pennsylvania School of Nursing and a co-author of
the credible sources report. “You get fact-based information as the first component” of a search.
Still, there are plenty of other online venues where misinformation metastasizes.
“Once these beliefs have taken root, it’s harder to disabuse people of them,” said Richard Baron, the president and CEO of the American Board of Internal Medicine, which has a foundation that has spent the last few years looking at misinformation and distrust in medicine. “And citing the FDA and CDC doesn’t work for people who believe the narrative that the FDA and the government that’s supposed to protect us is either captured by industry or in on the game.”
It’s hard to combat falsehoods that play on fear and distrust and division. Researchers have found that fact-checking — also known as debunking — is helpful for reaching those people who are uncertain or worried, who need more information but aren’t adamantly opposed to vaccines. Many of the people who started out hesitant about the Covid vaccine
did end up getting it, an outcome that reflected both mandates and growing confidence in the safety as more people took the shots.
But debunking doesn’t work so well on people who are dug in. Plus, by the time something gets fact-checked or debunked, it’s already circulating and has taken hold among some parts of the population.
That’s given rise to an effort to “prebunk,” or try to get ahead of the misinformation. Sometimes efforts are broad and largely intended to educate people (sometimes through quick online games such as the
Bad News game or
Go Viral) so their emotions and fears aren’t so easily manipulated on social media. It turns out we are hard-wired in ways that make it easier to petrify than to reassure.
The second kind of prebunking aims at either anticipating misinformation or at least detecting it so quickly that the public health community can counter it before it explodes.
With vaccines, it’s possible to prebunk and blunt some of the predictable tropes since there’s a well-known
anti-vax playbook of falsehoods. The various fictions include: Vaccines haven’t been thoroughly tested or they cause autism or they change human DNA or the side effects are worse than the disease or the vaccine gives you the disease or “natural” products boost immunity better than vaccines or vaccines are just a way for Big Pharma to make more money or vaccines damage fertility. (That last one is a particularly pernicious message given that the RSV vaccine is given during pregnancy.)
Those messages persist and proliferate, despite years of accelerating efforts to swat them down. And not all negative messaging can be anticipated. Did anyone really foresee that meme about Bill Gates inserting microchips in us via Covid vaccines? How about that wild claim that Covid vaccines contain eggs that
hatch synthetic parasites that thrive inside the human body?
In other words, prebunking may work up to a point against predictable messages, but public health and medicine need a way of monitoring social media to rapidly identify newly emerging misinformation. The right messages — say from trusted public figures who talk about why they are getting a certain vaccine or are giving it to their child — need to get out fast.
“Then you begin to build the confidence so that when that one crazy story comes in, it doesn’t have the same impact,” said Jha.
Several efforts to develop that kind of agility are emerging.
Among the most comprehensive is the initiative from the Public Health Communications Collaborative, which partners with the
Public Good Projects, a health care nonprofit that does broad, rapid monitoring of social media and works with both influencers and public health organizations.
The Public Good Projects shares with clinicians, public health officials and others a monthly survey of the health disinformation landscape. But monthly isn’t good enough when lies zip around the world in seconds. So Public Good now does more real-time monitoring, and when something bubbles up, the Collaborative shares it with health departments and agencies across the country — about 30,000 people as of late autumn, each of whom has their own networks. The Collaborative also sends out best practices for fighting high-risk misinformation, without inadvertently amplifying falsehoods.
If the Collaborative is working on the public health side, another new initiative called
Coalition for Trust in Health and Science is bringing together a large and growing group of public, private and nonprofit health organizations — medical, clinician, science and health care industry groups along with more traditional public health organizations.
“Given the magnitude of the challenge of misinformation/disinformation and distrust … we felt like this would be the moment where you had to bring together the entire health ecosystem,” said one of the founders, Reed Tuckson a well-known health consultant and physician who is also a co-founder of Black Coalition Against Covid. The organization, though drawing in a broad membership, is still in the early stages.
Other advocates have developed more ad hoc approaches.
A group called
ThisIsOurShot and its sister site
VacunateYa, organized by young doctors and nurses during Covid, promoted the RSV vaccine on social media.
Factchequeado, a Spanish language fact-checking initiative, has created a WhatsApp chatbot so people can discern health fact from fiction in their own messages.
And another group is taking a different starting point altogether: listening to local communities themselves. What are they hearing about public health, and what do they need to know? It’s called
Starting in St. Louis, in conjunction with the public health school at Washington University, iHeard distributes a weekly survey to about 200 people, which can be filled out in about three minutes. It asks about everything from vaccines to contaminated pouches of apple sauce popular with young children. iHeard is now spreading to several other cities across the country.
“We put in place a system, a kind of proactive community listening, to try to get a handle on what people were hearing and when new misinformation might enter the community,” said Washington University public health professor Matthew Kreuter. It began focused on Covid but has pivoted to health more broadly.
The survey information is posted on a public-facing dashboard, and it’s shared with partners in health, education, government and social services. The team also produces messaging that can be used on social media — where people in the community are more likely to see it than on a university dashboard. The whole program has the advantage of involving community voices, which build trust.
The RSV vaccines don’t generate quite as much fury as Covid, for several reasons, including the fact that there are no mandates for this shot, not at jobs, not at schools.
The audience is also narrower: Shots are recommended for people over age 60 and those who are between 32 and 36 weeks pregnant so they can pass on antibodies to the fetus. Infants not protected in utero, and other young children at high risk can get monoclonal antibodies, which isn’t technically a vaccine although it is an injection. Those monoclonal antibodies were in short supply this season, as this was one place where manufacturers apparently underestimated the demand — or overestimated the already considerable hesitancy.
In addition, the target population for RSV shots — people over 60, people having babies — are likely to be connected to the health care system; they’re already patients. That means they are more likely to have a doctor, a nurse or other provider that they know and trust. That’s not the case for some of the more militant anti-vaxxers, who are distrustful of the whole medical establishment. Yet vaccination rates were low.
Finally, public health experts noted, anti-vaccination sentiment is so high right now that the disinformation makers don’t have to go after RSV specifically to instill fear and mistrust in a new shot. It just got wrapped into the whole deepening anti-vaccine gestalt. Routine childhood immunization rates are now down
to 93 percent for kindergarteners, below the 95 percent threshold the CDC says is needed to thwart disease outbreaks.
“There’s a level of exhaustion, right?” said Katy Evans, senior program officer at de Beaumont Foundation, one of the groups forming the Public Health Communication Collaborative. “You want me to get three — in some cases, three — vaccines this fall: a Covid booster, a flu shot and an RSV vaccine. And if I am someone who doesn’t really understand why those things are valuable, that feels like a big ask.”
The relatively disappointing uptake on RSV vaccination underscores just how big an ask it was.
Ultimately fighting disinformation comes down to trust. Trust is what a lot of the malevolent messengers are trying to destroy, and trust is what the public health, scientific and clinical worlds have to rebuild. That’s a resource even more valuable than the smarter, faster, better tools being developed to combat misinformation and disinformation.
It can’t just be about “getting ahead of a wacky narrative that resonates” with people who no longer trust doctors or scientists, said ABIM’s Baron. “People are believing this stuff because it is consistent with a narrative they already believe. And we have to get better in constructing a different narrative.”