The WHO Collaborating Centre on Global Health Histories, which is supported by the Wellcome Trust, has produced a series of seminars in association with the WHO HQ, WHO Regional Offices, WHO Country Offices and national governments, which look at the reasons why a growing number of people are not taking up vaccinations – and how this can be countered.
The seminars can be viewed and/or listened to here:
Global Health Histories Seminar 107: Cultural contexts of health: vaccine hesitancy - Why do some people not vaccinate?, WHO Regional Office for Europe, Copenhagen, Denmark
Speakers: Heidi Larson (London School of Hygiene & Tropical Medicine), Robb Butler (WHO Regional Office for Europe)
Global Health Histories Seminar 113: Immunization for Universal Health Coverage, Nazarbayev University, Kazakhstan
Speakers; Professor Clare Griffin (School of Humanities and Social Sciences, Nazarbayev University), Dr Byron Crape, Nazarbayev University, Dr Namrata Ganneri (University of York and SNDT College of Arts & SCB College of Commerce and Science for Women, Mumbai).
Global Health Histories Seminar 133: The Health Challenges of Social Marginalisation, Timisoara Science Festival, Romania
Speakers: Vlad Mixich (Executive Director of the Romanian Health Observatory and Board Member of the European Public Health Alliance); Lynda Dunlop (Lecturer in the Department of Education at the University of York) Oana Romocea (Executive Director, Hategan Foundation & Founder of the Timisoara Science Festival) and Ruxandra Eva Ciucur (Partner at Hategan Attorneys)
This briefing draws upon the presentations at these seminars.
In 2020, the hope of a vaccine to target COVID-19 has become a major global focus. Yet there remains a significant minority of people who are not sure if they would accept vaccination – and a number who would flat-out refuse it.
“Vaccination is very important. Without it, we wouldn’t have achieved the eradication of smallpox,” says Professor Sanjoy Bhattacharya, director of the Centre for Global Health Histories at the University of York and of the WHO Collaborating Centre for Global Health Histories. Other diseases have been minimised to the point where family doctors often never come across them, and babies in many countries are immunised routinely and repeatedly from the age of a few weeks. Yet the opposition to a COVID-19 vaccine is only part of a greater phenomenon.
Opposition to vaccination, or ‘vaccine hesitancy’, is actually increasing in the 21st century. A relatively small number of people are adamantly opposed to all vaccines but a growing number, particularly parents of young children, are sceptical about vaccination or about specific vaccines. “In contrast to the great successes of the 20th century, there have been well-publicised problems with immunisation in the 21st century,” Dr Clare Griffin of Nazarbayev University points out. “The history of vaccination and immunisation is not a march of progress but actually more like a bell curve.”
“The World Health Organization (WHO) estimates that the measles vaccine saved an estimated 17.1 million lives between 2000 and 2015 alone,” says Dr Byron Crape of Nazarbayev University. By contrast, children who have not been vaccinated have been subject to successive outbreaks of measles, pertussis and other diseases, some of which have had serious effects including fatalities. “Every time we have an effective antivaccination movement we see a decline in vaccinations and an increase in the diseases those vaccinations were designed to protect against,” Crape adds.
What is fuelling this vaccine hesitancy and the resulting rise in entirely preventable diseases?
A movement with a long history
Although the anti-vaccination movement has gained particular traction in recent years, it has been around as long as vaccination itself. “The notion that vaccination is a delusion goes way back, from the moment the whole concepts of vaccination and immunisation were being configured,” says Professor Heidi Larson of the London School of Hygiene & Tropical Medicine, who is also the director of The Vaccine Confidence Project.
The arguments against vaccination have always invoked concepts of ‘purity’ and ‘nature’. “The idea that ‘anything that's natural is better than a vaccine’: that's been around since day one.” And it has, today, become big business too, she adds. “A lot of the naturopathy and homoeopathy books, videos and businesses are making a lot of money promoting their products over-vaccination.” Alongside that, Larson points out, people do not like the idea that vaccination is being imposed on them and/or their children. “The first anti-vaccination leagues were actually initially anti compulsory vaccination.”
The paradox of low-level disease rates
Ironically, the very fact that many diseases are now seen much less frequently has contributed to the drop-in vaccination rates. “When there was a spike in smallpox rates, people got scared and were vaccinated: when rates dropped, demand reduced,” says Bhattacharya. If that is the case with a lethal, much-feared disease it is hardly surprising that it’s the same with other conditions. “If you’ve never seen a vaccine-preventable disease in your community you are less likely to be concerned about that disease. You become complacent and apathy sets in. I'm sure that if I went to my mother's home community on the Isle of Man and I asked people about measles today, half of that community would probably tell me that measles was eliminated decades ago,” says Robb Butler, then WHO
Programme Manager, Vaccine-preventable Diseases and Immunization and now Executive Director, WHO Regional Office for Europe. “Particularly if you’ve got a concern about vaccination – even if it’s only a very small concern – if you don’t feel you need it, why would you do it?”
That complacency can extend to health policy as a whole, Butler adds. “Fewer and fewer new GPs know what a case of rubella or measles actually looks like. Particularly in countries that have not been witnessed or suffered the phenomenal health and financial costs of an explosively large outbreak, there’s less likely to be sufficient investment in that element of the health programme.”
Dr Vlad Mixich, executive director of the Romanian Health Observatory, explains how measles vaccination rates have dropped dramatically in Romania over the past 20 years – a sharper decrease than anywhere else in the world – and how rates have increased as a result. “We started from a pretty good coverage, but we’re now very low according to WHO standards and well below the level recommended for herd immunity. That led to an outbreak of measles between 2016 and 2019, with more than 17,000 reported cases. There were also 64 deaths, all except one in unvaccinated children.”
Justified fears
Historically, there have been plenty of situations where opposition to being vaccinated is extremely easy to understand. “We have to be careful when we identify resistance or hesitancy, to what people are resistant about,” Bhattacharya says. He gives several examples in the context of the smallpox vaccine in India in the 1960s. “The rotary lancet equipment which was initially used for smallpox vaccination effectively inflicted an open wound which could become infected. The resistance in rural India was not to the vaccine itself but to the sepsis which could result from the vaccination process.”
Later on, in the 1970s, vaccinating teams were feared for other reasons. “There was the occasion where 100 volunteers were trained to go into the villages of Uttar Pradesh. As it turned out all 100 were Hindu. They tried to vaccinate in Muslim-dominated villages, and they realised everyone had disappeared. This was also at the time when young Muslim men were being forcibly sterilised, and the later enquiry revealed that this was why they had run away. So very quickly international aid agencies learned that they needed to get a range of local collaborators, who could inform them about fears, and anger, and then slowly involve local vaccinators.”
There were some even more frightening incidents too. “International volunteers recruited to the Indian smallpox eradication programme were often heavily-built overseas workers over six feet tall. Their job was to hunt down people resisting vaccination, sit on them and forcibly vaccinate them. This is not a figment of my imagination; I actually interviewed the people who did the sitting and are now very guilty about having sat on emaciated bodies. And those emaciated bodies that were sat on so disrespectfully, those women who felt that their dignity had been compromised as they were sat on by a man, and their sari covering their faces was possibly moved, are now the bodies of grandmothers. They are some of the most influential decision-makers about vaccination out there.”
Larson has further examples of what she terms “the surrounding histories and politics that play out on vaccinations”. “We’ve seen multiple mass reactions to the HPV vaccine which have been deemed psychosomatic or anxiety-related in a number of settings. One very widely publicised case was in Colombia, where some of the girls were having cases of tachycardia, shortness of breath, chest pain and fainting. This was in an area with a history of paramilitary violence and sexual violence against young women. The experience of the vaccination triggered and released those deep anxieties and fears; and right now, if you go to any of the global registries, HPV has the absolute highest number of adverse events reported (not confirmed) following immunisation. There are a lot of reasons these anxieties are coming out – often unrelated to the vaccine itself, but triggered by the experience of vaccination.”
Parents’ concerns about vaccination
Even in ‘normal’ contemporary urban situations, vaccinating children, particularly new babies, can be a very upsetting experience. It involves, after all, putting a needle into a child and causing them pain. Particularly since this involves making an appointment, taking time off work, and possibly sorting quite a few other logistics too, it’s easy to see how hesitancy can tip over into reluctance, and then into avoidance without thinking through the genuine risk to a child who is not vaccinated. But importantly, Larson does not feel that vaccine hesitancy should simply be overruled.
“We can't prevent vaccine hesitancy, and nor should we,” she says. “I mean, think about the whole process of smallpox variolation from the beginning: you take some virus from a cow and you put it in a child. That can’t be something nobody questions. Any responsible parent with a first-time child should be asking questions about what they're giving their child, whether it's a medicine or a vaccine or anything. So, the last thing we should be doing is shutting them up. In fact, that’s one of the biggest reasons we're having the challenges we face right now; I think it’s payback time for the years of ‘take this, it's good for you, it's totally safe, don't worry about it’.”
In fact, Butler argues, many parents who do vaccinate are not particularly thinking their decision through either. “A lot of people vaccinate without thinking about it. Their decisions are neither well-informed nor poorly-informed; they are just doing it because of social copying.” “It’s very interesting that in Romania, the most vaccine-hesitant people are the ones who are highly educated and urban,” adds Mixich. Butler’s own experience echoes this too. “It’s truly remarkable, but there is a lot of vaccine hesitancy in families from higher socioeconomic groups where both parents work, particularly in northern Europe. The most fortunate often make the most unfortunate decisions. My own GP told me I’m in the hard-to-reach population. My wife and I both work, we don’t have a particularly cohesive relationship with our local community and we don’t go to church – so we become hard for health services to reach.”
But clearly, respecting this hesitancy does not mean accepting vaccine refusal. Instead, it’s important to analyse just what is going on, and particularly how vaccination hesitancy is able to spread at the moment; and, as a result, work out how it can be combated.
Trust and lack of trust
Larson argues very strongly that effective vaccination coverage only happens if people trust what is on offer. “Trust is about a relationship. Do we trust that someone is capable of doing what they say they can? And what is their motive? ”"Is this doctor genuinely concerned about the health of my child and my family, or is he/she in it for the money they make out of it?” some parents ask.
They need to trust the product, the healthcare system and the political system. Romania provides a very good example of a society where this is not the case, with inevitable results. “There is very low trust in the whole political infrastructure, including its institutions,” Mixich explains. “And the trust in the healthcare system is also extremely low, although we do place a reasonable amount of trust in scientists. A recent study also showed that Romanian parents, whether they’re vaccine-hesitant or not, have strong concerns about conflicts of interest and financial interest when it comes to doctors and the pharmaceutical industry.”
There’s an obvious further breakdown in trust if healthcare workers themselves express concern about the vaccine, as, for instance, a high proportion in Romania do. “There are a number of physicians in Armenia who actually state that they refused to vaccinate their children against anything except polio,” adds Crape. “They know the history of polio and what polio does, but they don't recognise the importance of vaccinations against all these other childhood diseases.” Overall, Larson sums this up as “one of the biggest challenges we have now. We have this whole cohort of health professionals including scientists and Nobel Prize winners who are questioning one or more vaccines”.
The internet and fake news
The huge difference for the anti-vaccination movement and vaccine hesitancy has, of course, been the internet. In the past two decades, the way people consume, create and relay news has changed completely, with increasing numbers relying solely on what they find online – especially for health information. It is also, importantly, a worldwide change; people in extremely remote areas have access to the internet and all it contains – and the technology and platforms are also changing very rapidly.
The information online includes rigorous, peer-reviewed studies and meta-studies into different forms of immunisation. It also includes misinformation, misinterpretation and anecdotes presented as disinterested research – complete with pictures and video to give the messages extra punch. Crape cites examples in a range of different languages. “There’s a picture of crying baby and an ugly needle – it’s an emotionally laden photograph – alongside six reasons to say no to the vaccine. They’ll say that pharmaceutical companies can’t ever be trusted; that all vaccines are loaded with chemicals and heavy metals (in reality there are no heavy metals in the current children’s vaccines); and so on. Yes, a handful of vaccines have been removed from the market but those are very few and the ones that are currently provided are safe. And they say, ‘you can always get vaccinated, but you can never undo a vaccination’, to suggest that you still have the choice even if you don’t do it.”
Crape adds: “This is all underpinned by bad or incomplete science or findings that are taken out of context. If you look at the peer-reviewed published literature, you can’t find evidence for the claims that rates of learning disabilities, or attention deficit hyperactivity disorder (ADHD) or autism are higher in children who have had the vaccines. And then finally they try to justify it further by showing books that show the dangers of vaccines, all of which are written by physicians, in order to show that this is real science, it’s a very serious problem and we're killing our children with vaccines. It doesn’t matter where you live: all you have to is pull out your phone and hook up to Google and they're all there for you. The anti-vaccination movement is spreading out from high-income countries and those countries haven’t responded sufficiently.”
Public health campaigns and professional responses
Others agree that public health campaigns to date have not tended to dent the success of the anti-vaccination ones. “From a public health authority perspective there's not enough done in terms of understanding and managing Dr Google,” says Butler. “In Europe, reliable robust information that’s simply easy to use information usually comes at around 15th place on a search. I feel there’s not been enough done on it, but it’s also extremely difficult to tackle because a health authority can never be as nimble as a vocal single individual.”
He adds: “As human beings, we’re guided by emotion, and we have a simplification bias. We find that when information and actions are easy to understand we're more likely to change our perceptions and behaviours accordingly. The anti-vaccine lobby understands this very well – and to some extent so do pro-vaccination campaigns, with examples like children blinded by rubella, so parents are often left with very mixed messages.” And most people decide in advance which stories they are going to believe, too. “We have a confirmation bias; we're more likely to believe messages that support the conclusions that we've already come to, and we filter new information according to this.”
Dr Lynda Dunlop, Lecturer in the Department of Education at the University of York, adds a further perspective. “According to the WHO, around half the adults around Europe have poor health literacy. This goes right back to the classroom and how young people learn about science and health. We need better collaboration with teachers, research-informed resources, and support from other disciplines – and we need to pay attention to the values and attitudes that young people bring to the classroom in the first place.”
Larson also picks up the issue of how individual health professionals are not equipped to counter vaccine-hesitant patients or parents. “There’s usually very little in medical training about vaccines. You’re taught about giving a difficult diagnosis, but not about how to handle a conversation where someone says ‘I don’t want what you think I should have’ or start challenging you, which is happening more and more. Very often health professionals just shut down and say ‘That’s OK, you don’t have to have the vaccine’, in order to keep the trust of the patient. So, some groups are suggesting that training in dealing with that sort of conversation would be useful.”
Stories and narratives
Mixich frames this in terms of narratives and stories. “We are impressed by stories, regardless of how truthful those are or how well-prepared we are to appreciate them. They can be a good tool or a very dangerous one.” The anti-vaccination stories are often very coherent, moving and aimed at getting an emotional response: they are not concerned with the qualifications or nuances of factual reporting, because they operate on a different level. They also focus heavily on temporal associations – events that happen after vaccination but aren’t necessarily anything to do with the effects of vaccination.
“We are slowly understanding how to communicate better,” says Butler. “We’re realising that it’s not enough to ‘myth-bust’; we now know that it's very important that we replace that myth with information. And the way we frame our arguments and facts is very important as well, which unfortunately many healthcare practitioners in the European region still don't understand. You’re much more likely to opt for a burger that is 75 per cent fat-free, or a vaccine that is 99.9 per cent safe, than one that’s communicated to you in a different way.”
His feeling, though, is that vaccine hesitancy cannot be solved by communications alone. “Communications have a phenomenal amount to do with it, but we know from the last four decades of communicable disease prevention that knowledge doesn't necessarily predict action. An informed individual is not necessarily a behavioural responsive or responsible one. I think we need to embrace the social sciences, and people from medical humanities and medical anthropology backgrounds, to get their insights into hesitancy and what we need to do to tackle it. The solutions are as much to do with tailoring service provision as they are with communicating messages.”
“The end message is that evidence-based information isn’t enough any more,” Mixich concludes. “In countries like Romania, it’s very important for us to know that a safe and effective vaccine has two ingredients: good science and good stories.”
Radhika Holmström is a Wellcome Trust-funded writer and communications specialist working with the WHO Global Health Histories project at the University of York.
