Public Health Enters the Era of Infodemiology
Misinformation can thwart the work of public health. Leaders from the field are bringing the mindset they use to detect and contain disease to the rapid, far-reaching spread of an information epidemic.
Much has been said and written about the threat that false information about election integrity poses to the health of American democracy. Nonprofit organizations, academic institutions, election consultants, law enforcement, journalists, government officials and others have mounted efforts to combat this disinformation. Investigations and, in some cases, even indictments have followed.
False information is also a significant threat to the physical health of individual Americans. It has undermined trust in public health systems that foster good health in many more ways than many realize. As Dr. Leana Wen at George Washington University’s Milken Institute School of Public Health often said during her time as the health commissioner for the city of Baltimore, “Public health saved your life today, you just didn’t know it.”
As is the case with elections, disinformation has led to threats against public health workers, prompting retirements and resignations.
The term “infodemic” came into use during the 2003 SARS (severe acute respiratory syndrome) epidemic. A member of the advisory board for the Johns Hopkins School of Public Health wrote that an "information epidemic" transformed SARS “from a bungled Chinese regional health crisis into a global economic and social debacle.” The word “infodemic” has since come to encompass the rapid, far-reaching spread of misinformation about any subject.
In April, the National Academies of Sciences, Engineering and Medicine (NAS) held a two-day workshop to consider public health infodemics, their impact on public trust and the ability of public health to do its job, and practices and tools for dealing with them. The proceedings from the meeting were published this month.
Howard Koh holds an endowed chair in health leadership at the Harvard T.H. Chan School of Public Health and the Harvard Kennedy School. He chaired the committee that planned the workshop and served as its host. Koh began his career as a cancer doctor, but shifted focus after encountering suffering and fatalities that public health has the power to prevent. He has served as public health commissioner for the commonwealth of Massachusetts and assistant secretary of the U.S. Department of Health and Human Services.
“Misinformation has been recognized as an inherent part of public health emergencies, but through COVID it hit unprecedented levels,” says Koh. Several factors set the stage for that. Science evolved over the multiyear course of the pandemic. Public health measures aimed at slowing the spread of the virus caused confusion and disruption. A 24-hour news cycle and a continuously expanding ecosystem of news and opinion platforms gained global reach through social media.
“The speed and scale of this infodemic swamped our current capacity to respond, especially given the underfunded state of public health systems,” Koh says. “Instead of being surprised, we must be proactive and anticipate misinformation in future crises and have more robust response systems ready to go.”
Brian Castrucci, executive director of the de Beaumont Foundation, has a word for this next step. “We are really at a point where we have to launch a new practice in our nation’s health department, and that’s ‘infodemiology.’”
An Asymmetrical Threat
Michael Fraser, chief executive officer at the Association of State and Territorial Health Officials (ASTHO), was a panelist in a roundtable discussion at the end of the NAS workshop. One takeaway, he says, was that “misinformation” has more than one meaning.
For example, a person with a pre-existing lack of knowledge about a public health function could “learn” something from others that is not based in fact or science. “That’s one level, but then there’s a more organized campaign by small numbers of influencers who purposely put things out there to drive people to their websites or social media accounts and turn it into an industry,” says Fraser. “That’s what I refer to as the ‘asymmetrical threat.’”
To bring things into balance, government likely needs the help of influencers and champions outside of government. At the same time, it needs to do more to keep up with what is being said about public health issues on social media or in the press.
Tools for this kind of “social listening” are in place although not widely used in the public sector. Castrucci says that de Beaumont and other foundations are sorting out how they can get the necessary social listening resources into public health departments.
“There’s a gap in the ability of health departments to do effective media monitoring, and anyone who’s concerned about the health of the nation needs to figure out how we bridge that gap.”
Koh agrees. “Timely identification and response to misinformation is the next critical frontier for public health — it’s going to be a major priority for society at large and for public health departments in particular.”
The media landscape isn’t the only place beachheads need to be established. Public health needs to do more to engage the medical community and health-care providers, Fraser says. Americans are more likely to trust their physicians in regard to health decisions than elected officials or career civil servants.
“Anything said by anyone in government is going to be interpreted from a partisan lens, even if it’s objective health information,” says Fraser.
Americans use Internet searches almost as often as news platforms to get their news. Search results aren't ranked by accuracy, but by popularity. There are few filters for falsehoods.
Elisabeth Wilhelm, a visiting fellow at the Information Futures Lab at Brown University’s School of Public Health, has worked at the forefront of the field of infodemic management. She worked at the Centers for Disease Control and Prevention (CDC) from 2016 to 2022, and during the pandemic she was given the job of standing up the vaccine confidence strategy for its COVID-19 task force.
One piece of that work was establishing an “insights unit,” CDC’s first attempt to understand how the information environment was affecting public perceptions and behavior. It wasn’t focused on disinformation alone, Wilhelm says. The goal was to understand the totality of the information affecting attitudes — or missed opportunities for accurate information to make it into the information environment.
“It’s not all misinformation. It’s people not knowing where to look for information, outdated information, unsettled science, dodgy scientific papers — and press commentary and social media conversations — that were causing confusion and affecting decision-making about vaccination,” says Wilhelm.
The health information ecosystem before COVID-19 was complex and contradictory. It is more so now. There’s low-quality information on everything from cancer to diabetes that might be more emotionally compelling than sober, fact-based content from a local health department website.
But the risks of misguided decisions became much greater during the pandemic. In emergencies, people tend to believe the first thing they hear. “It’s like the perfect storm,” Wilhelm says. “An information environment that’s extra chaotic and extra loud can cause a lot of harm.”
Better data isn’t the only tool for breaking through such chaos. At Brown, Wilhelm is leading a research project that is capturing stories of people who worked on the front lines of the pandemic and the ways that the information environment affected members of their communities.
“If you get enough stories, and read, analyze and discuss them, you can start developing themes that you might miss if you try other types of data collection,” Wilhelm says. Her aim is to create a toolkit that can inform education and outreach strategies for any community health issue.
The work is benefiting from a storytelling workshop the World Health Organization hosted in 2022 in partnership with the nonprofit Story Collider. It brought forward stories ranging from an uncomfortable encounter between a pregnant pharmacist and a maskless COVID-19 denier to the discomfort felt by a journalist whose colleagues knowingly perpetuated misinformation because it was “sexy” and sold.
A New Kind of Workforce
The skill set public health professionals use to trace the origins of disease and track its spread through a community could give the sector an edge in the emerging field of infodemiology.
“Prevention is the heart and soul of public health,” Koh says. He embraces the concept of “prebunking” — empowering people with accurate information before they are exposed to misinformation.
Wilhelm recalls an analysis the Census Bureau did for CDC to find out how many conversations around COVID-19 vaccines centered on misinformation. It was a very small percentage, she says, and more a matter of questions and concerns from people seeking information but unable to find it.
“Infodemic management teams should be the foundation of public health efforts going forward, in every agency,” Koh says. These systems need to be built now, before another critical threat or exposure event.
“We have to talk about the practical side of this — the logistics of how we actually train a workforce to do this work and give them the resources so that they can be successful,” says Castrucci.
Wilhelm agrees with ASTHO’s Fraser that public health will need partners in this work. “It’s silly to expect public health departments to go out and battle the Internet,” she says. The problem is too complex, affecting too many levels of society for them to fix it alone.
“They need policies, they need coalitions, they need partnerships with the health sector, with the private sector, with the media, with all kinds of actors and communities,” she says. Building fundamental health and digital literacy are essential to “prebunking,” as is doing more to provide accurate information about health topics to members of the press.
“Making your local health department web page better isn’t necessarily going to solve this.”