Misinformation: The Many-Headed Hydra
The ‘Disinformation Dozen,’ and more than 50 docs fueled COVID lies
Nucci spoke at a recent webinar on communication and misinformation held by the Association for Professionals in Infection Control and Epidemiology.
“People will often say to me, I saw it on the internet, I saw it on Google, it was in my news reel,” she said. “It’s become part of our culture to see information on social media. YouTube videos look very professional, and they gain a lot of followers — they have channels. They can create all kinds of shows about healthcare information. Being a slick video, it can gain a lot of legitimacy. Facebook, being unregulated, has the ability to track and point users unilaterally, based on very sophisticated algorithms, to information that’s being posted from around the world. It is an open, open platform. Twitter and Instagram, same thing. Small bits of information, easily digestible, but also easily incorrect.”
Researchers have found that about 12 people are responsible for the bulk of misleading claims and outright lies about COVID-19 vaccine and other vaccinations, Nucci noted.
In that regard, the Center for Countering Digital Hate has dubbed these people the “Disinformation Dozen” and issued a report claiming they are responsible for most of the vaccine misinformation on social media.1 The report identifies them by name and urges social media companies to end their accounts.
“If we’re going to become thought leaders in spreading legitimate information through our social media and through our hospital media, then we need to understand the thought processes behind those trying to spread disinformation,” Nucci said.
The narratives pushed by disinformationists during the pandemic included that SARS-CoV-2 was a mild infection and that vaccines were the real danger. Similarly, they warned that doctors, scientists, and infection preventionists cannot be trusted, Nucci said.
“There were people who would rather lose their jobs than get a COVID vaccine, and these were healthcare workers — people who were seeing people die of COVID,” she said. “Still, for some reason, even though they had gotten all their other vaccines — I had employees who would get the flu vaccine but would not get the COVID vaccine.”
Healthcare workers should not engage in these point-counterpoint discussions on their social media, she recommended. “Even if you’re just trying to make a legitimate argument, by doing that you’re actually increasing their views — even though you might be correct,” Nucci said. “Not engaging, I think, is a good tool, but listen and understand why they’re [posting] these messages.
Meet people where they are by joining local groups within your facility and community. The principal truths are clear, but nuance may be required to communicate fully.
“COVID is dangerous. Vaccines are not dangerous,” she says. “I think many of us knew that right from the very beginning. But these are the simplest terms, because we can debate that. We can’t say vaccines are never dangerous. A side effect like anaphylaxis is dangerous, of course, but it is risk/reward [equation].”
Thus, while all medical procedures carry some level of risk, the idea is to weigh the possible side effects of the vaccine against being infected with COVID-19. At the beginning of the pandemic, when the entire population was susceptible, the benefit of vaccination was much greater than the risk of an infection that could hospitalize or kill you.
“Can we create a narrative that says, ‘You can trust me, your infection preventionist’?” Nucci said. “You can trust your doctor. You can trust your scientist. How do we make sure that we’re engaging in that narrative?”
Inevitably, friends and family will ask you your opinion of the current medical situation. “I think it’s really important that the infection preventionists’ information to their families and visitors is clear and without judgment,” she said. “You should be communicating through multiple channels and talking to your media specialist in your organization.”
Similarly, you want to communicate clear and consistent messages to frontline staff, although this was undermined somewhat by the constantly changing public health recommendations early in the pandemic.
“We were having to say wear a mask, don’t wear a mask,” Nucci said. “Wear an N95. Nope, we don’t have enough N95s. Wear maybe a gown and gloves, negative pressure rooms — maybe not negative pressure rooms. It was a really difficult time for an infection preventionist to communicate clearly, and I struggled with it myself.”
Misinformation Docs
All the while, pseudo-experts, and even physicians were spreading misinformation. Looking at high-use social media platforms, researchers found 52 American physicians from across a range of medical specialties were spreading misinformation about COVID-19 during the pandemic.
“This study’s findings suggest a need for rigorous evaluation of harm that may be caused by physicians, who hold a uniquely trusted position in society,” the authors reported.2 “Ethical and legal guidelines for propagation of misinformation are needed.”
The contact author for the report had not responded to a request for an interview as this report was filed. Although some medical boards have acted to suspend the licenses of physicians spreading misinformation, it appears many of these doctors have escaped consequence.
In an in-depth report that reviewed about 2,500 medical board licensing documents from all 50 states, The Washington Post found that about 20 doctors nationally were penalized for complaints related to COVID-19 misinformation between January 2020 and June 2023.
About half of those either had their medical license revoked or surrendered it. However, others experienced only minor penalties or none at all.
“A Wisconsin doctor in 2021 prescribed ivermectin, typically used to treat parasitic infections, to two COVID-19 patients who later died of the disease,” the Post reported.3 “He was fined less than $4,000 — and was free to continue practicing.”
The authors of the misinformation journal article said, “The two most prominent medications promoted were ivermectin and hydroxychloroquine, which have been found to not be effective at treating COVID-19 infections in randomized clinical trials.”4,5
They estimated that one-third of the 1.1 million COVID deaths in the United States could have been prevented, underscoring the damage done by misinformation.
“Physicians’ propagation of misinformation about COVID-19 on social media and other internet-based platforms has raised professional, public health, and ethical concerns,” the authors reported. “[The physicians] propagated COVID-19 misinformation about vaccines, treatments, and masks on large social media and other online platforms. [M]any had a wide reach based on number of followers.”
Although this may seem beyond question now, it is well to remember that the pandemic was subject to a confluence of events that included sharp political divisions, emerging research that often was published before peer review, and a rapidly evolving virus that was subject to renewed scrutiny at every iteration.
Moreover, the Centers for Disease Control and Prevention (CDC) reversed course on some guidelines — sometimes rather quickly — before ultimately apologizing for mishandling the pandemic.
Save Legitimate Scientific Debate
William Schaffner, MD, a veteran epidemiologist and professor of health policy at Vanderbilt University, is wary of the pendulum swinging too far in the other direction.
“There is room for different points of view interpreting the same scientific data,” he says. “This [journal] article — at least as I read it, doesn’t give sufficient credit to this. They have focused on a small group of people, whom they quite reasonably define as purveyors of misinformation. But during this entire COVID period, as new information became available, I remember very thoughtful debates about the effectiveness and utility of masks, for example. On some of these issues there was room for reasonable debate. You have to be very careful of impeding genuine scientific discussion.”
Another example of this legitimate disagreement is when Paul Offit, MD, an internationally recognized vaccine expert, voted against creating the 2022 COVID-19 bivalent booster containing the original Wuhan strain and an Omicron component. A member of the vaccine advisory committee for the U.S. Food and Drug Administration, Offit said the level of additional protection the vaccine would provide was questionable and it did not merit recommendation to a broad swath of the population. The vaccine measure passed, but the bivalent vaccine was poorly received, and uptake was low.
The misinformation article cited questionable claims about both vaccine ineffectiveness and risks.
“A common approach included circulating counts of positive case rates by vaccination status, claiming that most positive cases were among vaccinated individuals,” the authors reported. “This claim is technically true but misleading, as many more people are vaccinated, and the proportion of unvaccinated people who are infected is much higher.”
In terms of risk, the researchers said some physicians made “unfounded claims” on social media that the COVID-19 vaccines caused infertility, caused irreparable damage to one’s immune system, increased the risk of developing a chronic illness in children, and caused a higher risk of cancer and death.
“Several physicians redistributed news articles with stories of individuals suddenly or mysteriously dying from the vaccine, despite evidence from the CDC confirming that deaths caused by a COVID vaccine were extremely rare (nine deaths for more than 600 million doses administered in the United States as of January 2023),” the authors reported.
Of the 52 physicians — who were not named in the article — 42 (81%) posted vaccine misinformation, 40 (77%) propagated information in more than one category, and 20 (39%) posted misinformation on five or more social media platforms.
“Individual health behaviors related to COVID-19 have been attributed to complex social phenomena, including inconsistent recommendations by government entities early in the pandemic, mistrust of the scientific community, political polarization, and unclear or incorrect guidance from other sources,” the authors concluded. “Medical misinformation was propagated long before the COVID-19 pandemic, but the internet increases [the] reach and speed of dissemination, potentially exacerbating misinformation consequences during an unparalleled public health threat that has killed more than 7 million people across the globe.”
REFERENCES
- Center for Countering Digital Hate. The disinformation dozen: Why platforms must act on twelve leading online anti-vaxxers. https://252f2edd-1c8b-49f5-9bb2-cb57bb47e4ba.filesusr.com/ugd/f4d9b9_b7cedc0553604720b7137f8663366ee5.pdf
- Sule S, DaCosta MC, DeCou E, et al. Communication of COVID-19 misinformation on social media by physicians in the US. JAMA Netw Open 2023;6:e2328928.
- Sun LH, Weber L, Godfrey H. Doctors who put lives at risk with covid misinformation rarely punished. The Washington Post. Published July 26, 2023. https://www.washingtonpost.com/health/2023/07/26/covid-misinformation-doctor-discipline/
- Self WH, Semler MW, Leither LM, et al. Effect of hydroxychloroquine on clinical status at 14 days in hospitalized patients with COVID-19: A randomized clinical trial. JAMA 2020;324:2165-2176.
- Roman YM, Burela PA, Pasupuleti V, et al. Ivermectin for the treatment of coronavirus disease 2019: A systematic review and meta-analysis of randomized controlled trials. Clin Infect Dis 2022;74:1022-1029.
Social media platforms have become the Wild West of misinformation, and current indications suggest this is going to continue and possibly expand, said Donna Nucci, RN, MS, CIC, director of infection prevention, Yale New Haven Health.
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