INFORMATION CHALLENGES:
VACCINES IN THE AGE OF ENGAGEMENT

It’s not news that the information ecosystem has fundamentally changed over the past 20 years because of near-universal internet access and network capacities. What’s important to understand about this shift is that for many previous decades, information of public significance was shared and validated by trusted gatekeepers, including journalists and — in public health emergencies — public health authorities. By democratizing the production and dissemination of information, the internet and the platforms it hosts have enabled two important shifts:

• New and previously marginalized voices can now be heard, with immense consequences. For example, the documentation and dissemination of instances of police violence have compelled an unprecedented reckoning with law enforcement and racism that would have been impossible without cellphone videos shared on social media.

• Manipulative and confusing information can now be shared rapidly, without filter, to millions around the world. The internet creates unprecedented opportunities to disseminate inaccurate or misleading information.

These opportunities are due to the sheer scale of information being created, downloaded, shared and consumed on the internet, as well as our increasing reliance on it for work, play and social connection. Internet use has steadily increased year on year, but the pandemic intensified this trend. Beginning with the early lockdown in March 2020 and the social isolation that followed, the pandemic made the internet even more central to our lives — a situation that persists to this day, with many Americans who previously worked in offices continuing to work from home.

The internet’s democratization of information has clear benefits, but flattening information hierarchies also makes it harder to discern trustworthy from dangerously false information. The design of the internet, and social media in particular, often gives equal footing to information from very different sources. Vaccine information from traditional information gatekeepers with rigorous and responsible fact checking, such as journalists and public health authorities, may have little prominence over anyone with a computer or smartphone, including conspiracy theorists, hoaxers and ill-informed social media “influencers.”

Authoritative sources are often less accessible or appealing than social media due to closure of local and community newspapers, paywalled national and local news sites, and newsrooms that fail to represent the diversity of their target audiences. In the gap left by these authoritative sources, communities turn to social media, as well as to local leaders and, in diaspora communities, information from their home countries.

Users can now seek out vaccine information from thousands of sources, rather than passively receiving information from authoritative sources. But the results of Googling something can be overwhelming, making it difficult to distinguish between accurate, misleading and false results, as well as feeding our tendency to reaffirm our existing worldviews or beliefs.

Digital divides turn digital-only solutions into disparities

In the pandemic, good internet access became even more important, but not all Americans have broadband access, and there are major racial disparities. A 2021 Pew study found that while 80% of white respondents said they had broadband at home, only 67% of Hispanic and 69% of Black respondents did. In households with an income below $30,000 per year, roughly a quarter (24%) say they don’t own a smartphone. In addition, 43% of adults with lower incomes do not have home broadband services and 41% do not own a desktop or laptop computer. Access to the internet in public spaces such as libraries was also closed down early in the pandemic.

Broadband internet is essential for remote schooling and working from home, but it is also critical for health, including accessing the latest public health guidance and information, attending telemedicine appointments, and, crucially, booking vaccine appointments. Particularly in the early days of the vaccine rollout, securing appointments required repeatedly refreshing web pages, and those without broadband access and experience in navigating online portals were seriously affected and remained vulnerable. Broadband access is also essential for children to be able to attend remote school, which in turn is important in a pandemic for social connection, retention of learning, and mental health.

(See also Section 3: Structural Barriers)

The digital divide predated the pandemic, but the health consequences were greatly amplified.

Recognizing the types and tactics of bad information

Given the new information ecosystem’s vulnerabilities, it is important to understand the types of problematic information available on the internet, and the tactics applied by those spreading it.

Disinformation

Disinformation is false or misleading content created and shared deliberately for profit, influence or mischief. Disinformation actors appeal to powerful emotions such as fear and anger to prompt people to share posts without analyzing them. The number of disinformation sources is relatively limited, but they can function as “superspreaders,” creating false content and then amplifying it through widespread dissemination on social media and elsewhere.

Disinformation typically focuses on visual content — photos, memes or videos — that has an immediate and often emotional impact. Rather than point to links to more information or substantive analysis, disinformation content leverages the superficial and argumentative engagement of social media, encouraging users to continue engaging and scrolling.

Disinformation posts also often take advantage of heuristics —the mental shortcuts people use to help quickly make sense of information — to appear more authoritative.

(See also Section 3: Behavioral and Social Drivers)

Examples include:

• Using Photoshop to add the CDC or CNN logo to a post
• Using visual cues, like someone wearing a white coat or holding a stethoscope
• Suggesting unique insight: “My brother works for the government and has inside knowledge. He just told me that…” or “My sister is a nurse and just called me from the ICU to tell me…”
• Creating content that looks like a first-person experience. It is very difficult to fact check someone saying, “This happened to me,” even if it is all made up
• Creating a professional-looking website to suggest trustworthiness
• Using unique or rare terms to raise their content’s prominence in related searches.

Malinformation

Malinformation is accurate information shared knowing that it could cause harm. Examples include private information shared deliberately, such as “doxxing” or sharing a person’s religion or sexual identity or gender identity for the purpose of encouraging bullying behavior or hate speech against them. It is a tactic used often in this pandemic by those hoping to bend preliminary evidence about the virus, treatments or vaccines toward their beliefs or goals.

Vaccine malinformation is usually presented in a misleading way or without the context necessary to understand it. For example, a small group of non- pediatric, non-cardiologist physicians exaggerated  the risks of myocarditis associated with mRNA vaccines while downplaying the potential benefits of the vaccines for adolescents and children.

While researchers were still studying the true rates of myocarditis and pericarditis from mRNA vaccinations in adolescent males, this group of physicians took the highest available estimates and included those in their op-eds without noting the lower estimates, the limitations of the study they cited, or ongoing research.

Some of these same physicians published a preprint paper with estimates of post-vaccination myocarditis/pericarditis incidence collected from the Vaccine Adverse Event Reporting System (VAERS) without noting the substantial limitations of VAERS, a passive surveillance system that provides no denominator for data and cannot be used to estimate incidence of an adverse event (or even whether the adverse event is actually causally related to the vaccination). Several other physicians described the problem with the preprint at the time, but misuse of the VAERS database is a common malinformation tactic. The data in the database include genuine reports of adverse events, though unverified by the U.S. Department of Health and Human Services, but without context and responsible presentation it is malinformation — misleading and deceptive.

Misinformation

Misinformation is information that is false or misleading according to the best available evidence at the time. Health misinformation has a long history, including in the HIV epidemic and the 2014 Ebola outbreak in west Africa, reflecting the human urge to seek out information, even of dubious accuracy, to try and understand a new and frightening disease. During the Covid-19 pandemic, however, the growing power of social media platforms to amplify rumors and conspiracy theories helped elevate misinformation that might have previously been contained within smaller peer circles and geographically bounded communities to national attention.

Why people share (mis)information

People share information for pragmatic reasons — to understand confusing events and keep our loved ones safe during a pandemic, for example — but also to create and maintain a sense of identity, community and connection. And we share misinformation for the same reasons.

The World Health Organization termed the challenges posed by the torrent of information about Covid-19 — including false or misleading information — an “infodemic.” The major social media companies have responded with stricter policies limiting false information about Covid-19 or the vaccines, but the sheer scale of misinformation on different platforms, in different countries and in different languages has made these interventions largely unsuccessful.

The seriousness of the misinformation problem was recognized by the U.S. Surgeon General’s Confronting Health Misinformation report published in July 2021. Methodological and other challenges make it difficult to estimate the degree to which vaccine misinformation has prevented people from getting vaccinated, but physicians around the country have reported patients repeating dangerous rumors and conspiracies as justifications for behaviors connected to Covid-19, including requests for off-label treatments such as ivermectin, that can result in negative health outcomes, and unwillingness to get vaccinated.

Networked ideological groups disrupt traditional communication approaches

In this pandemic, authorities have struggled to understand why tried and true top-down communications techniques no longer work. Relatively niche conspiracies have been able to jump borders, for example, connecting people who might have otherwise been more amenable to broad public health communications.

In the new information ecosystem, the fragmentation of media makes it harder to reach people with broad announcements, and it emboldens communities that are deeply connected via online networks. People find one another on Facebook Groups, via Instagram hashtags, YouTube comments, live streaming services such as Twitch, forums such as Reddit and Discord, or closed messaging apps such as WhatsApp, Facebook Messenger and Telegram.

Their networked communities are full of engaged people who validate one another and share a purpose, seeking and finding affirmation from their online communities. They are often largely invisible to public health and other authorities as they exist in closed Facebook groups or chat apps, making it harder to counter rumors or to understand how certain communities are being specifically targeted with disinformation.

Networked groups now also cross international borders, as the same content and rumors jump from anti-vax groups in the U.S. to western Europe to Australia to Africa. During the measles outbreak in Samoa in 2019, for example, there was a great deal of evidence that U.S.-based anti-vaxxers were  pushing dangerous misinformation into the island  nation, having serious consequences. During the Covid-19 pandemic, BIPOC communities in the United States are being targeted by white anti- vaxxers, as are countries in Africa and other parts of the world.

Systemic racism, health inequity and information

These information challenges are made worse by systemic racism and longstanding health inequities in America. In a study on the role of misinformation in Black communities, researcher Kaylin Dodson writes:

“Narratives that seem easily generalizable across all populations become much more intricate and multilayered when looked at through the context of Black communities. For example, the idea that the vaccines are experimental, rushed and unsafe is common among anti-vaxxers of all communities. Yet the narrative becomes more complicated and potent when we consider the history of medical experimentation on Black people and how current concerns reflect this history.”

But, while lower rates of vaccination among Black communities are often reduced to explanations of vaccine hesitancy or vaccine misinformation, the reality is that there are Black people who are hesitant to take the vaccine and there are Black people who can’t get vaccinated because of a lack of resources in their communities.

“Not every Black person is genuine in their  invocation of Tuskegee, Henrietta Lacks or Jim Crow stories. These histories have not only been weaponized by anti-vaccine members of Black communities but also by non-Black anti-vaccine activists as ways to prey on or even coerce Black communities into rejecting the Covid-19 vaccines. For example, both Black and white conservative pundits have used Jim Crow language and references as a way to condemn the use of vaccine passports.”

(See Chapter 1 for how health inequities impact vaccine demand)

Data deficits make people susceptible to misinformation

Information alone is insufficient to support vaccine demand, but without adequate information, the “information supply chain” fails and makes us more vulnerable to misinformation. When people’s unique questions haven’t been adequately answered in public health communications, people are drawn to conspiracy theories or stumble upon them and dig in.

Because of the urgency of the pandemic, Covid-19 vaccines were rolled out while research into their efficacy and side effects was ongoing, with some questions not fully resolved. Public health authorities sometimes struggled to address these ongoing questions clearly and strongly, so that people seeking answers found either no answers, poor-quality or confusing answers, or so much information that they did not know where to start.

These “data deficits” occur when research is ongoing or data incomplete, and strong, coherent public health messaging is difficult to produce. This leaves vacuums that are strategically filled by conspiracists and bad actors looking to take advantage of people’s fears and concerns.

The nonprofit First Draft identifies five qualitative indicators that help identify data deficits as they emerge, and can be used to support the development of clear messaging strategies to bolster vaccine demand:

Novelty

With new or esoteric subjects, quality information might not exist or have been disseminated in a compelling and accessible manner, while compelling misinformation can be produced quickly and easily and therefore benefit from “first mover” advantage.

Technical complexity

For subject matter that is technical, complex or specialized, easily accessible information may be particularly difficult to produce, while messages that simplify the topic in a misleading manner and incorporate it within already-popular narratives are likely to resonate with receptive audiences.

Alignment with pre-existing narratives

If the subject can fit into pre-existing, long-standing disinformation narratives, it may be easy to instrumentalize these topics as part of wider misleading messages aimed at exploiting fears, eroding trust and increasing polarization. For example, anti-vaccine activists have used novel vaccine technologies to stoke fears about the safety of vaccines, and thereby bolster narratives portraying all vaccines as untrustworthy.

Political saliency

Similarly, if the data deficit aligns with existing political cleavages it may be exploited by those seeking political advantage.

Legitimate questioning

When the subject includes areas of legitimate inquiry and ongoing research, misleading explanations that address natural concerns may appeal to mainstream communities and thus reach a larger audience. For example, social media posts containing interrogative phrases such as “is this true?” “really?” and “what?” in a particular content area may indicate a data deficit.

Decisions about health and behavior are driven by a wide range of factors beyond what we know about a specific risk. In the next chapter, we explain why informing people about the risks of a disease, the benefits of a vaccine, the likelihood of side effects, or how a vaccine works, is important but on its own not sufficient to motivate people to get vaccinated, or to motivate them to stop believing in mis- and disinformation.