Vaccine confidence. Inside the fight against misinformation

The other surprise has been how bad political leadership has been. “Really damagingly bad. You want to think in situations like this, when you have a common threat, that people would come together. But some of the political leaders… I don’t know what they’ve been smoking, but they have undermined an effective response. While there’s usually an outlier here and there, there have been far more and in far more situations than I would have expected.”

The 64-year-old American anthropologist is about to receive, on July 4, The Edinburgh Medal, an award given by the Edinburgh Science Festival each year to women and men of science who are judged to have made a significant contribution to the wellbeing of humanity. Her work on vaccine hesitancy has been described by Scottish Government Covid-19 advisor Professor Devi Sridhar as “vital”.

It was while Larson was working for UNICEF on strategy and communications for the introduction of new vaccines during the early 2000s that she started to notice that around the world there were “so many little outbreaks of rumours, of questions, of government officials having concerns, as well as communities and religious leaders around vaccination programmes”.

The tipping point for her was the 11-month boycott of the polio vaccination campaign in Nigeria, following rumours that vaccines from the West were sterilising children. (Such was the intensity of feeling that, later, in 2013, nine polio workers were killed by gunmen suspected to belong to a radical Islamist sect.)

“What struck me,” she recalls, “was it had such a huge global impact, and it was literally only a rumour. There was no adverse event. It was really political, and I said we need to get ahead of these things before they create such damage.”

Her big idea, the one that drove the Vaccine Confidence Project, was that what was needed was “to put some metrics around this messy space”. She felt what was also required was “to get a bit more anticipatory and pick up earlier signals of rumours, of concerns, before they erupted into vaccine boycotts or disease outbreaks”.

READ MORE: Experts create guide aimed at fighting Covid-19 vaccine misinformation

At that time, many were sceptical. “Not a lot of people back then thought it was a good idea. Worse than that, some of them thought that if I talked about it [rumours and vaccine mistrust], that would cause it…. If there’s one big change in the last decade, it is the immunisation community gets it. It has acknowledged it. What did Freud say? If you don’t acknowledge a problem you can’t do much about it.”

Larson has long been a believer in vaccines. They have, she says, saved her life a few times. An example she gives was a very serious bout of typhoid fever. “I was surprised because I had gotten my typhoid vaccine. They said, ‘Don’t regret that vaccine because it probably saved your life’. They’re not 100% preventative, but they certainly mitigate the seriousness.”

One of the things that alarmed her was that, on returning to Europe and the United States after working in some of the poorest countries in the world, she found an “emerging tsunami of scepticism around one of the most tried-and-true, life-saving health interventions in history”.

Larson has seen severe Covid-19 up close. Her husband, the world-leading microbiologist, Peter Piot, who was part of the team that discovered Ebola and did gound-breaking work on HIV, contracted it in April 2020. For eight days he was in hospital on oxygen. It was, she recalls, “touch and go.” Larson caught it herself, but had much milder symptoms, chiefly marked by extremely severe headaches, and had no need for hospitalisation.

Those days in hospital for Piot later morphed into “very Long Covid”. Only about a month ago, more than a year after her husband’s hospitalisation, Larson observes, did he start to feel normal. “It’s really serious. Anyone who brushes it off as something like the flu has no idea.”

Piot wrote about the experience, describing that confrontation with the threat of death. “You surrender to emotional reflections. They [the viruses] got me, I sometimes thought. I have devoted my life to fighting viruses and, finally, they get their revenge. For a week, I balanced between heaven and Earth, on the edge of what could have been the end.”

Public trust in our experts and leaders is one of the big issues of our times – and one that has been even more in the spotlight over the past year, as governments have told us to stay at home, wear masks and take vaccines “With Covid,” Larson says, “it’s not just about vaccines. The whole issue of public trust and confidence has been so fundamental to getting populations to cooperate with government restrictions.” What is being expressed in vaccine mistrust is, she notes, often a “bigger, underlying issue” to do with relations with governments, institutions, authorities, industry, political systems.

Among the things that the Vaccine Confidence Project has done is to measure levels of mistrust. It turns out the UK has what Larson describes as a “reasonable level of trust”. In the project’s global confidence index, the UK is on a par with the US, and much more trusting than the rest of Europe, though Larson notes, there are “certain clusters of very outspoken people”.

“The UK has not been without some pretty loud, angry anti groups during Covid, around lockdown and around vaccines. It’s got pretty nasty. There have been people burning down cell phone towers saying that that’s what’s causing Covid, some pretty extreme behaviour.

“I think in the UK, there has been an overall decline in vaccine acceptance in the last 10 years. It’s been going down in a very slow but steady way.”

Bottom of the league not just in Europe, but in the whole world, meanwhile, is our neighbour, France. “The worst in the world,” Larson says.

Why? “The culture of debate in France is very different. They had other trust issues, there was perceived issues around the hepatitis B vaccine, and that fell on the heels of a tainted HIV blood scandal. That broke trust with the public. There was also outrage when during the H1N1 pandemic, the government appeared to over-buy vaccine relative to the threat. There were these perceptions of being in bed with big business.”

In terms of vaccine trust over the pandemic year, she also thinks more could have been done to “anticipate where the resistance and hesitancy would be, and start building confidence in those communities rather than vaccinating the super-elderly, and then thinking, we’ll get to that later.”

One of the things she has spoken out against is the overuse of the term ‘anti-vaxxer’. “I’m not against the use of it,” she says when I remind her of this. “But I think it’s used way too loosely. If a mother has a concern about a vaccine, she gets sometimes written off as an anti-vaxxer. That’s been hugely problematic and judgmental and wrong. But I do think there are some people who I would categorise as anti-vaxxers. It’s just it has become so loosely used in the media for a much bigger spectrum of people than just those who are the very serious, highly organised disruptive anti-vaxxers.”

Such disruptive activists have a long history. The first anti-vaccination league came together in the UK in the 1850s, when a law made smallpox vaccination compulsory. Their impulse was libertarian. They weren’t against the vaccine, but its compulsory nature.

Larson has examined old anti-vaccine pamphlets from that period. Lines she found in them included, “It’s not natural” and “imposing on our freedom, our rights”. These are sentiments that still abound, 40 years after the world was freed of smallpox following a global vaccination programme.

Make a vaccine compulsory, and you are more likely to make the hesitant more resistant. Larson notes, “Dr Alex de Figueiredo, our lead stats guy, did an analysis looking at 17,000 people in the UK. One of the things we threw in there were some questions about passports. It was fascinating. People who were accepting of vaccines didn’t have a problem with the passports, particularly for international travel, though they weren’t keen on it for local events. But for those who were hesitant, the notion of a passport made them even more hesitant.”

In order to increase people’s confidence, Larson says, what you have to do first is understand why they are wavering. “One of the big mistakes we’ve made historically has been assuming that people just don’t have the right information or that we already know what they’re thinking, then throwing the wrong thing at them. It seems disrespectful and it makes the situation worse. So I think that the big number one thing is trying to understand what’s driving their lack of confidence and sometimes that whole act of just listening, and actually caring about what they’re thinking already helps.”

Among the worst things to do, is to talk about it being a moral imperative or duty. “There was a very big data analysis we did with the World Economic Forum, and with a group called NetBase Quid. They found anything that suggested moral imperative created a backlash because it was too finger-wagging, too judgmental.”

Analysis of The Vaccine Confidence Project data has also found a link between vaccine mistrust and populism across the EU. “That came from a colleague, Dr Jonathan Kennedy. He found that if you were voting for the more populist party, you’re much more likely to be sceptical about vaccines. It was strikingly consistent.”

In her book Stuck: How Vaccine Rumours Start, she writes of how resistance is often driven by deeper grievances. “Government controls in the name of Covid-19 can unearth deep-rooted angers against the state. Issues from gun rights to immigration, medical freedoms and abortion were the real roots of dissent.”

Such is the potential for division that, researchers found, the issue became the target of Russian bots, which seeded stories on both sides of the vaccine debate, pro and con, in the US. “This was not about the vaccine,” Larson writes in Stuck, “this was using vaccines as a medium to amplify and polarise emotions to divide society.”

What’s interesting is that the rumours that have sprung up, around both vaccines and the disease during this pandemic are not new – they are just new versions of old narratives. For instance, Larson observes, the 5G rumours that drove the destruction of towers, were an iteration of the stories that surfaced around SARS being caused by 4G technology, and swine flu by 3G.

“I remind people about that because, while this isn’t about vaccines, this is an issue about anxiety around technology. It’s an issue of the tension between science and society and technology. Any new technologies that have come on board, from the radio to the TV, there’s always a spell of adjustment and acculturation.”

How we feel about technologies is at the heart of her work – and links her vaccine research back through to her early work as an anthropologist when, after she had finished her PhD, she had a job at Apple, in which she was sent out to do fieldwork on attitudes towards computers in classrooms. At the time, there was a one computer per classroom programme, which was getting “kickback”, she says, from teachers. “They found it threatening,” she recalls. “But kids were saying, ‘What are they so stressed about? You know, there’s one computer, there’s 30 of us, and they block all the good stuff anyway.’ It was funny.”

Before her project, vaccine mistrust wasn’t something the scientific establishment had been particularly interested in. One of the things Larson observed in the science community was that when “this whole messy issue of emotions and trust and feelings would emerge”, many, though not all, scientists would not know what to do with it.

“One of the reasons I left UNICEF to start the Vaccine Confidence Project was to try to anticipate and predict but also start to get some metrics around this because people kept saying to me, Is it getting worse? And I said we’re not going to know till we have a benchmark. We’re not going to know until we consistently measure this, which is what we’ve done in the Vaccine Confidence Project. We’ve put some numbers around it, brought a science to the field of human emotions and values. I do that partly for the scientists – because I realised that until it is something tangible, measurable, they won’t listen to it.”

At the heart of all her work, she says, has been a fascination with human behaviour. She had always loved science, and had started out studying biomedical engineering, but she would see “the wonders of technology and science”, and think of how “humans have other drivers” that she felt were missing in her initial scientific studies.

Whilst studying for her undergraduate degree at Harvard, she did an ethnographic study of five Downs Syndrome children. That inspired her to look at other minorities or people with differences and technologies. “I’ve always been fascinated by human behaviour, and I guess that’s the thread and applied it in different ways at different points in my life.”

Her interest in other people’s experiences started long before that. Her mother was a German professor, her dad an Anglican priest involved in civil rights activism. Both of them, in different ways, helped form her view that “understanding people different from us is an important issue”.

She is, she observes, “probably a pretty rare anthropologist that spends a lot of time with big data”. But the field is changing. More people are coming into the science of vaccine hesitancy from multiple different backgrounds: engineering, physics, mathematics.

Her disappointment around the way world leadership has behaved is clear. She seems sceptical about how much we have adapted to the pandemic and learned from it. “Did we adapt? We weren’t ready.”

In terms of UK leadership, she believes, the biggest error was not acting quickly enough at the very beginning of the pandemic. “Way too many people died because of delay by the UK Government. What I didn’t understand was Italy was burning, but we still didn’t do anything. I mean, if we didn’t have an Italy or if we didn’t have some tangible experience so close to see how bad it can be, I would have understood the initial delay. But when something is right at your doorstep... I could not for the life of me understand not acting sooner.”

However, she observes that the fact that a year into a pandemic, we now have not just one vaccine, but a choice of them, is a scientific marvel. “In that sense, I think that the wonders of science have created unrealistic expectations. There was this race to get there first, to have the first big vaccine, but it was short sighted to be so focused on the science. It misled the public. Getting there first, from a scientific perspective is only from a scientific perspective. I think we misled the public in the sense of what was going to be practically feasible.”

The science, in other words is one thing – what we do with it, how we behave around it, how we roll it out, another.

Heidi Larson will be presented with the Edinburgh Medal as part of Edinburgh Science Festival 2021 and give her Medal Address at 7pm on July 4