Words matter revisited: It matters how we refer to vocal vaccine deniers in public health

In mid-2020 a curious thing started to occur as the COVID-19 pandemic evolved - the spontaneous and exponential growth of vaccine confidence experts coming out of the woodwork. The whole world was desperate for effective tools against COVID-19 infections, and the rapid development of new vaccines foreshadowed enduring public interest in COVID-19 vaccines.

Coupled with the growth of the COVID-19 infodemic, public debate about vaccines, their efficacy and safety often generated headlines that were sometimes written devoid of public health expertise.

Words matter in public health.

When words and descriptions are used carelessly, they can be stigmatizing and can cause harm, even if used with the best of intentions. This is the reason why WHO has issued guidance on the naming of new pathogens. It's also why style guides have been developed for communicating about public health issues. For example, WHO infodemic management team refers to the health equity style guide of US CDC when writing infodemic insights reports and recommendations, and makes an effort to apply health equity-sensitive lens to all our work.

Words matter in vaccine demand promotion.

During the COVID-19 pandemic, and as more countries began to develop and introduce more COVID-19 vaccines, various terms were used to describe the phenomenon of people who were not vaccinated. These people may not be vaccinated due to choice, but more likely than not, this is due to policies prioritizing certain populations early on in the pandemic, or vaccine access, supply and service delivery issues in their communities - see for example barriers to vaccination in undocumented migrants, or discussion of vaccine hesitancy in Africa.

The word cloud of words to describe this set of interrelated issues included: anti-vaxxers, vaccine hesitancy, vaccine refusal, vaccine acceptance, vaccine uptake, vaccine demand, and vaccine confidence. And then there were variations of these that used the word immunization or vaccination, eg "vaccination acceptance".

There are many behavioral scientists that have studied vaccine attitudes, perceptions and behaviors. If you want an insight into the complexity of these terms, and the ongoing scientific debate on which terms are the most accurate to describe a country's immunization picture, refer to this most recent article on a long-standing approach among vaccine experts: Dudley MZ, Privor-Dumm L, Eve Dubé , Noni MacDonald . Words matter: Vaccine hesitancy, vaccine demand, vaccine confidence, herd immunity and mandatory vaccination. Vaccine. 2020 Jan 22;38(4):709-11.

Some of these terms are problematic when used to describe groups of people. For example, calling a group of people "the hesitant" dramatically oversimplifies a complex socio-behavioral issue related to the decision to vaccinate and overrides other identities that people may have. It also positions a group of people as a monolith or a barrier to achieving a public health outcome. We should not be problematizing groups of people when our responsibility is to serve them.

Similarly, some news organizations have been guilty of using inflammatory terms like "anti-vaxers" to describe groups of people who may only have mildly objected to vaccination or expressed hesitancy or concerns about vaccines. Instead, "anti-vaxxers" suggests an organized group of people with an anti-public-health agenda, when in reality, the vast majority of people are not anti-vaccine. It's the reason why before COVID-19, the vast majority of the world's children received routine vaccines - because it was a widely accepted social norm to do so.

WHO Europe has unpacked some of this complexity in their guide on how to respond to vocal vaccine deniers.

Understanding the population segments in relation to vaccine uptake

Every country that introduced COVID-19 vaccines had to segment their populations to determine the best strategies for communication and outreach to promote vaccine uptake. Very often, you could disaggregate these groups into three buckets (see an example from Canada, based on vaccine acceptance continuum):

• people who are vaccinated or who are willing to be vaccinated
• people who are on the fence, or unsure about getting vaccinated
• people who express hesitance in getting vaccinated

Vocal vaccine deniers are an extremely small percentage of the third group. Most of the time, the majority of the population will be willing to be vaccinated or is unsure and just needs additional information, their questions answered, or a nudge. The share of people who refuse vaccination and actively advocate against vaccination among their family and communities is an extremely small part of the population.

However, some have seized on the label "anti-vaxxer" as a badge of pride, and in some countries it would become synonymous with arguments related to medical freedom, and freedom of speech. This is why public health professionals should not be propagating this term.

Each of these three groups have different ways of seeking health information, sharing information they find and have different susceptibility of sharing misinformation. An infodemic manager would take this into account when devising strategies to support vaccine demand.

It's imperative to get the words right and to use non-stigmatizing language, especially for an issue like vaccination because we are already seeing evidence of vaccine hesitancy related to COVID-19 vaccines and erosion of trust in health authorities affecting parents' willingness to get their children vaccinated with routine childhood vaccines.

I did a search of some common term trends on Google Trends, and you can see "antivax" searches peaking in 2019 and 2021 during COVID-19 vaccine introduction, and "vaccine hesitancy" peaking just before the COVID-19 vaccine introduction.

Given everything I described above, did we fail in communicating, answering concerns and questions about vaccines, and addressing barriers to vaccine demand, so that the pervasive narratives in people's conversations were about the exact topics that are stigmatizing and polarizing?

Everyone working in public health needs to do a lot better when it comes to understanding vaccines and vaccine demand.

I'm not a vaccine expert, but I've seen these challenges unfold during the COVID-19 response and watched them emerge in infodemic insights analyses throughout the pandemic. Everyone that is not a vaccine demand specialist should know our own limitations, consult experts when developing tools for immunization programs, and humbly research and learn this area of work.

This story repeated itself during the monkeypox outbreak when communication strategies were sometimes developed without input from members of communities that were most affected (MSM and other LGBT communities, as well as women) or health programs such as HIV that had longstanding trusted relationships with these communities.

Read further

If you're interested to read further on drivers of vaccine demand, a good resource for standardized measures for vaccine demand and drivers of vaccine uptake are the WHO behavioral and social drivers of vaccination, and the GAVI/UNICEF/WHO and partner vaccination demand hub.

For a discussion of the anti-vaccination movements, I recommend this article: The long, strange history of anti-vaccination movements. VOX, 2022.