Why COVID misinformation continues to spread

Penn Medicine’s Anish Agarwal discusses why false claims about the virus and vaccines arise and persist, plus what he hopes will come from NIH-funded research he and Penn Engineering’s Sharath Chandra Guntuku have recently begun.

A silhouette of a person in black on a red background. The person is holding a phone that reads "COVID-19" and the back of the head is open, with many different symbols flowing out, including a globe, a hospital, a needle, a vial, a mask, the dollar sign, and a TV screen that reads "Fake News."

For the better part of three years now, COVID-19 has dominated news cycles, with pandemic-related information showing up in social media as much as—or sometimes more—than in traditional media. Anish Agarwal, a Perelman School of Medicine emergency physician and deputy director of the school’s Center for Digital Health, experienced firsthand how this affects health care interactions.

“COVID changed the game in so many ways,” says Agarwal, who is also chief wellness officer in Penn Medicine’s Department of Emergency Medicine. “People started using social media more and thinking about how we interact and communicate with each other, especially in the early phases of the pandemic. News was hot off of people’s fingertips.”

That access, coupled with the pace of change, gave misinformation the space to take hold, and despite how much more we know today than in spring 2020, that challenge still persists, Agarwal says. It’s something he and Penn Engineering’s Sharath Chandra Guntuku plan to study thanks to a $3.8 million grant they received this past fall from the National Institutes of Health.

Penn Today spoke with Agarwal about misinformation generally, what he thinks could improve the situation, and where he hopes his research will eventually lead.

Anish Agarwal and Sharath Chandra Guntuku
Anish Agarwal (left) of Penn Medicine and Sharanth Chandra Guntuku of Penn Engineering. As part of their work for the Center for Digital Health, they’ve begun research focused on health-related misinformation. (Images: Courtesy of Agarwal and Guntuku)

Why is this line of research important?

The intersection of public health and social media is a real one. We have to acknowledge that and realize that this environment exists and impacts human health behavior. Five, 10 years ago, researchers didn’t need to look at spaces like TikTok. But now they can—and probably should.

What do we know already about how social media use during the pandemic shaped people’s health-related behavior?

For one, COVID accelerated how fast we talk about science. Everyone remembers when Fauci first mentioned masks, and it quickly became a hot-button issue. Social media clearly amplifies the speed at which this content gets moved around. It also accelerates how quickly people pick up on really small details and who they trust. A decade ago, what a doctor or nurse said was highly trusted, but in today’s landscape I don’t know whether that’s still true, partially because on social media anyone can say almost anything. There’s minimal regulation.

How does this ecosystem set the stage for misinformation to arise and persist?

This isn’t specific to COVID, but I’ll give the example of celebrity Jenny McCarthy. I don’t know much about her except that she has a strong opinion against pediatric vaccines and that she is not a nurse or doctor. She is a person with a lived experience—and I don’t discount that—but her platform was really big and so her message spread far. Anyone can build a platform by saying something in an engaging or persuasive way.

We saw this all the time in early COVID, with false information spreading about the vaccines, people using buzzwords like ‘hydroxychloroquine’ and ‘nano-robots’ and the like. I didn’t think people actually believed what they were reading, but, when I asked those who weren’t vaccinated against COVID why not, they would say it’s either because they saw this thing or heard that thing. It gives you a deeper understanding of how people are processing what they see on social media, be it true or not. With COVID, we’re watching it happen every single day, in real time.

Can you give an example?

The cardiac arrest and recovery of football player Damar Hamlin. There was a tremendous outpouring for this young man. I was blown away by humanity showing collective concern for someone they’d never met. But there was an odd subtext playing out on Twitter, that because he was vaccinated against COVID this was myocarditis-related, which made zero sense.

Without social media, that wouldn’t have become louder than a whisper, but with social media it gets loud. People go into their echo chambers, and that becomes all you’re exposed to, this nagging voice that what happened to him happened because of the COVID vaccine. It doesn’t make any sense, and the fact that we have to give it any credence is a distraction.

How do you think we can prevent misinformation about COVID or anything else from gaining traction?

A one-size-fits-all approach will not work. We need to understand how teens interact with social media and how 40-year-olds do, how people in urban and non-urban settings do, how people with different racial backgrounds and experiences do. That shouldn’t handcuff us, but it can help us develop different approaches to promote health behaviors for different groups. Doing that will amplify science and health and combat misinformation and disinformation.

That’s why I’m really excited about our team’s new research. Sharath and I are going to use machine learning to dive deep into roughly 800 individuals’ social media content, pulling out the misinformation at scale to look for themes related to health, how people are engaging with it, and the language they’re using. We’re also going to interview patients and put real content in front of them so they can tell us how they’re reacting in real time. ‘What are you thinking when you see this? Why did you retweet this? Tell me why you like this. How does that connect?’

What do you eventually hope your research can spur?

Maybe 10 or 15 years ago, you would ask your neighbor or friend about something going on with your health. Five years ago, you Googled it. Now it’s like, ‘I saw this post on TikTok.’ This all continues to evolve, and for me it’s interesting to explore and understand. The adage of don’t believe everything you see is so true. Wouldn’t it be great if instead of spreading misinformation, we could leverage the power of social media to help communities and help public health in a really nuanced way?

Anish Agarwal is an assistant professor and chief wellness officer in the Department of Emergency Medicine at the Perelman School of Medicine and deputy director of the Center for Digital Health at the University of Pennsylvania.

Sharath Chandra Guntuku is an assistant professor in the Department of Computer and Information Science in the School of Engineering and Applied Science, a fellow at Penn’s Leonard Davis Institute of Health Economics, and a research scientist in the Center for Digital Health.