Vaccine hesitancy and trust in health experts: Shifting the focus

In her book, Prof. Goldenberg explains that vaccine hesitancy is a spectrum phenomenon — people may feel anywhere from vaguely uncertain about whether or not a vaccine is safe and effective, to very anxious about its potential effects.

Yet the concept itself, she explains, is a fairly new one for public health experts to focus on — historically, public health institutions have focused on recording rates of vaccine refusal rather than looking at what makes people hesitant about accepting vaccines, regardless of their final decision.

Understanding what drives vaccine hesitancy, however, is far more helpful when it comes to promoting public health, Prof. Goldenberg argues. Firstly, she writes, understanding people’s misgivings about vaccines and allaying those fears can help boost vaccine uptake.

Secondly, failing to effectively communicate with people about what makes them hesitant when it comes to vaccination can actually make up their minds to refuse it.

So what are the factors that drive vaccine hesitancy? The COVID-19 pandemic has made one of them clear: Many people around the world do not trust national and international health authorities, often for complex reasons.

In our latest podcast episode, Aaron Khemchandani gave the situation in Hong Kong as an example, explaining that the mistrust in governmental institutions initially led to low COVID-19 vaccine uptake. However, the ensuing rise in COVID-19 cases eventually flipped the script, Aaron noted.

“[P]eople decided that the vaccine was important to protect the community, and community is one of the values that, especially in East Asia, is widely prioritized among the population. From the start of the pandemic, [in] Hong Kong mask wearing was widespread, because masks […] protect other people from you, so people wanted to protect their loved ones,” he explained.

“[T]hat just showed how [much] Hong Kong valued protecting the wider society, and so vaccines became part of that when [COVID-19] case numbers started to rise,” Aaron added.

While the outcome here is a positive one, for Prof. Goldenberg, the initial resistance to vaccines in Hong Kong was very telling about the way in which people’s relationship with institutions can influence their views about, and trust in, medical interventions.

“The things that really stand out to me from this account from Hong Kong,” she told us,” is the way that general trust in government and social structures influence opinions about vaccines.”

“[T]his goes against the common thinking that people who don’t vaccinate somehow don’t understand the science, or have some kind of cognitive break that keeps them from doing the right thing. Instead, there’s lots of social science research, not just in Hong Kong, but in many countries, pre-COVID and during COVID, showing that a person’s trust in government, especially [in a] government dealing with a crisis is largely correlated with your likelihood to get vaccinated. […] You have to trust the system that brings you vaccines, in order to be willing to participate in [vaccination programmes].”

– Prof. Maya Goldenberg

“It’s not about understanding science, […] it’s about trusting the scientific and regulatory process that is bringing us vaccines and telling us that [they are] safe and effective, and something that we should [accept]. If you don’t trust the system, you’re not going to trust the vaccine,” she pointed out.

While it may be helpful to think about hesitancy rather than refusal when it comes to understanding the factors that influence vaccine uptake, not everybody agrees that the term “vaccine hesitancy” is a useful one in every context.

For some, it is a misnomer that fails to acknowledge the fact that medical institutions themselves are sometimes to blame for the low uptake of vaccines in the community.

“[T]here were serious political complaints about the use of the term when, let’s say, there wasn’t enough access [to] vaccines [among] marginalized groups,” Prof. Goldenberg told us.

“And politicians would say, ‘well, they’re just vaccine-hesitant.’ And people from within those communities would say, ‘well, that’s [a] lazy use of the term, we have an access problem, we don’t have a vaccine hesitancy problem, and they’re using [the term] as a slide for not taking responsibility, for the lack of infrastructure, for the lack of supports for people who are not fully integrated into the system’,” she explained.

In fact, in the United States and elsewhere in Western countries, the people who have been disproportionately affected by COVID-19 throughout the pandemic are those belonging to historically marginalized communities, such as migrants, Black and Hispanic individuals, and those with undocumented status.

Oftentimes, individuals belonging to these communities work in customer-facing roles that increase their risk of infection, may face less safe living conditions such as overcrowded housing, and may have limited or no access to timely healthcare.

Even when they do have access to vaccines, people belonging to marginalized groups may still be hesitant to take them. Why is that?

According to research looking at vaccine hesitancy among Black adults in the U.S., their views on vaccination are “tied to the long legacy of systemic racism in the U.S. healthcare system.”

Both historical and recent personal experiences of discrimination in healthcare have rendered many Black adults less likely to trust the health system and healthcare providers who do not understand their needs and may often perpetuate harmful stereotypes.

“I think [the experience of current and historic discrimination is] a major driver of vaccine hesitancy,” Prof. Goldenberg told us. “I think it was like that before COVID, but it somehow became more visible to the public [during the pandemic.”

“I remember near the beginning of [the] COVID [pandemic], they had done a lot of survey research, when the COVID vaccines become available, [asking] ‘will you get vaccinated?’,” she recalled, “and it was treated as a surprise that marginalized groups who were suffering the most from COVID, [the] people that couldn’t work from home, lived in housing conditions that [weren’t] conducive to social distancing, […] were the least likely to get vaccinated.”

“And it shouldn’t have been treated as a shock, because I think the knowledge about mistrust of healthcare and government among marginalized communities was already there. It’s just that the links hadn’t been made between healthcare decision-making and experiences of marginalization. Truth is, we don’t even need to look that far back to famous case studies, like the Tuskegee syphilis studies — you can look at the experiences of […] people in healthcare today to understand why they’re not front in line there […]”

– Prof. Maya Goldenberg

It is difficult to deny that vaccine hesitancy is also complicated by wilful mis- and disinformation spread by influencers with questionable agendas.

In our discussion, Aaron mentioned the disproportionate impact of the so-called Disinformation Dozen — in 2021, the Center for Countering Digital Hate (CCDH) published the results of an investigation that found that most of the disinformation spread about COVID-19 vaccines online at that time had originated from no more than 12 active social influencers.

In today’s fast-paced digital age, altered information can spread very fast and do much harm. However, while she acknowledged the impact of mis- and disinformation, Prof. Goldenberg cautioned that we must be wary of blaming lack of trust in vaccines exclusively on the wrong information that easily circulates online.

There will always be bad social actors who spread health myths, she noted, and simply debunking those myths over and over will not be enough to restore the trust in health institutions, she argued.

Prof. Goldenberg also thought that some people may be attracted to these bad actors precisely because they place themselves in the role of fighters against an oppressive system — and that is what we need to address.

“[T]hat, for some reason, resonates with a lot of people and people who have experience of [how] this system fails them — the American dream is not something that they feel is within reach for them. So we need to look at the sort of social structures that create this level of dissatisfaction,” she emphasized.

“I look at all the time spent debunking the myths being propagated by these disinformants, and it’s almost beside the point. It’s not that we should let this disinformation linger […] But the point is, it’s just going to move from one [source] to another, you shut down one source another one will open up because there’s an appetite for it. You debunk one myth, it’s OK, another one will pop up in its place because people are looking for that kind of outlet. […] [W]hatever hurts that they are feeling they want to place it on something, and placing it on these kinds of disinformation and conspiracy theories [is] a way to have it all make sense […]”

– Prof. Maya Goldenberg

So if a lack of trust between the public and health experts and organizations is the core driver for vaccine hesitancy, how can we repair that trust?

Recent research suggests that what is most important for scientists, organizations, and individuals is to communicate with empathy, above all.

“There’s been good research demonstrating that the way to talk to people about vaccines is, first of all, not to try to convince them otherwise, and not to ply them with the facts,” said Prof. Goldenberg.

“A sympathetic approach is what works, you have to hear them out, listen to what they have to say, try not to be judgmental about it — that is hard to do sometimes because we’re all kind of tired and would like things to go a little easier. But the best thing to do is listen to what they have to say, respond not with the fact-based approach […] but [instead] ask more questions and try to find out where the source of the misgivings [lies]. There might be concrete pieces of misinformation, perhaps you can deal with that. But it needs to be done in a respectful way, the same way you would want to be spoken to by someone who disagrees with you.”

– Prof. Maya Goldenberg

“It’s more about try[ing] to meet them on common ground,” she noted.

Vaccine mandates may push some people to get vaccinated in the short term, but in the long term they will do little to report the trust between the public, the government, and health organizations, Aaron also pointed out.

“[Goverment-mandated restrictions] did increase the vaccine rate, but didn’t do anything to repair the trust between citizens and the government, because it was sort of done out of necessity and fear, as opposed to sharing any sort of values with government officials and their plan for success in [the COVID-19 pandemic],” he explained.

Aaron was in agreement with Prof. Goldenberg that empathy is key, and science communicators need to shift the way in which they approach vaccine hesitancy to put individuals and their experiences first:

“I think the most important thing is to find common ground, just to find shared values, understand people, understand them as people, as opposed to just [thinking of them as] statistics, […] understand historical context, empathize.”