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Trust in science - Health implications
Tuesday 25 June 2019, by
Source: https://www.linkedin.com/pulse/trust-gap-challenge-science-society-mark-henderson/
Photo: A health educator talks to women about mother and child healthcare in a village in Chad. Giacomo Pirozzi/Panos
The trust gap: a challenge for science, a challenge for society
Published on 2019 M06 20
Mark Henderson
Director of Communications, The Wellcome Trust
The Wellcome Global Monitor is one of the most important and interesting studies I’ve been involved with of late.
Conducted in partnership with Gallup, it is by far the world’s largest and most comprehensive survey of public attitudes to science – polling more than 140,000 people in 144 countries.
Never before have we been able to understand with greater confidence what the world at large knows, thinks and feels about science and health.
It’s an incredibly rich data set, and even with the advantage of several weeks before publication to explore it, I’m still finding my way around.
Many of the most striking findings, which the launch day media coverage has rightly highlighted, are about vaccine confidence – not least the insight that it is broadly the richer, more highly educated parts of the world that are most likely to believe that vaccines are unsafe. The picture in France, which is explored more deeply in this excellent Mosaic piece, is especially remarkable.
For me, though, there is another theme of the Monitor results that stands out. It’s what you might call the trust gap – the substantial differences in trust in science, and confidence that it works in your own interests, between those who are more and less educated and more and less comfortably off.
The figures are quite stark. Both within and between countries.
In high-income countries, people who say they are “finding it difficult” are three times more likely than those who say they are “living comfortably” to say that science benefits either them personally, or society as a whole. People with better access to communications — news, mobile phones, the internet — have stronger trust as well.
The level of overall trust that people have in scientists is also strongly correlated with a country’s Gini coefficient – the standard measure of inequality. In countries that are more unequal, people distrust science more. In countries that are more equal, trust is much higher.
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By the same token, trust in science does not seem to develop in isolation. It’s strongly correlated with trust in other institutions, such as governments.
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We’ve seen this before. The “trust gap” between a well-informed, well-educated, economically comfortable minority, and a broader population that is not so privileged, isn’t unique to the Wellcome Global Monitor. This is a picture that’s already quite familiar, from the last few years of the Edelman Trust Barometer.
The annual Edelman survey suggests strongly that what’s true for trust in science is true much more broadly across society. For some years now, it’s found a consistent and widening gap between the extent to which an elite “informed public” who follow the news and are well-educated and well-off, and the broader population, trust institutions of all kinds.
This year, Edelman found an 11 point gap in trust between the informed public (63%) and the general public (52%) worldwide, which was consistent to a greater or lesser extent across most geographies and pretty much all types of institution. This echoes a WGM finding that trust in science is fairly well correlated with trust in your national government and other institutions such as the military.
Trust in science, it seems, is quite likely to be a subset of a much broader question of trust in society.
That hypothesis gains further support from another very rich data set published this week – the Reuters Institute Digital News Report. This multi-country survey seeks to examine a different set of trends to the WGM – patterns of trust in and engagement with the media. But reading the two reports together this week, there are significant similarities.
In the Reuters Institute findings, we can see the same pattern of differential trust between more and less privileged groups. Across many countries, people with higher levels of education are more trusting of the media, and consume more news from higher quality sources.
The countries where trust in the media is strongest – Denmark, for example, and Finland – are rather familiar. They’re the same places where the WGM found trust in science to be highest, and also among the countries with the lowest inequality. France, once again, is the negative outlier – just 24% trust the media.
Polly Curtis, formerly of the Guardian and HuffPo, now a Reuters Institute Fellow, wrote interestingly in the FT this week about an emerging “unnewsed” segment of society. Less educated, less economically comfortable, less socially included, they are getting their information through different channels to more privileged groups, with potentially profound consequences for trust between them and the institutions they create.
“There have always been people who were unnewsed, but now they no longer live in an information vacuum. Instead, these citizens still consume information and share opinions, but based on sources that are not produced with the rigour and standards of traditional journalism,” Curtis wrote. “Poor information for poor people; richer sources for the rest. This digital divide has serious ramifications for every element of our democracy and society.”
We have a trust gap. We have a news gap. We have a science gap. These gaps haven’t emerged independently, but as part of a much more generalised divide. What those of us on the privileged side of this divide choose to do about it is the next big question.
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Pandaemonium
SCIENCE, VACCINES AND DISTRUST WITHOUT REASON
Kenan Malik
24.06.19
This essay, on a study of global attitudes to science and to vaccines, was my Observer column this week. (The column included also a short piece on Facebook’s launch of its digital currency Libra.) It was published on 23 June 2019, under the headline ‘A growing lack of trust in authority poses a serious danger to our health’.
Virtually every Bangladeshi and Rwandan believes that vaccines are safe. Fewer than half of Japanese or French do so. In Western Europe, one in six of those with college education reject vaccines. In Southern Africa, you’re twice as likely to do so if you attended university.
These are among the often disturbing facts that tumble out of a new study, the Wellcome Global Monitor, published last week. A survey of 140,000 people from 140 countries, it is at heart an exploration of the relationship between science, trust and attitudes to vaccination.
Trust has become a vital political issue. Many worry about the erosion of confidence both in expertise and in public institutions and about the social consequences of that erosion. One is the growing refusal to believe medical authority, especially about vaccination. From measles outbreaks in America and Europe to the spread of Ebola in central Africa, scepticism about vaccines has had a devastating impact.
The Wellcome survey suggests that the relationship between scientific and social trust and attitudes to vaccination is more complex than many imagine. One might think, for instance, that better scientific education and greater confidence in healthcare professionals would be linked to greater trust of vaccines. It isn’t. There tends to be greater scepticism about vaccines in richer, better-educated countries than in poorer states in which people have less education and are more sceptical about the benefits of science.
Western Europe shows some of the highest levels of trust in both scientists and healthcare professions: 88% have ‘high’ or ‘medium’ trust in scientists, 68% have ‘a lot’ of trust in medical professionals and 78% believe that science benefits people like them. But, with the sole exception of Eastern Europe, Western Europe also has the lowest level of trust in the world in vaccines.
Compare this with north Africa. Here, just 61% have trust in scientists, medical professionals are trusted ‘a lot’ by less than a third of the population and fewer than half think that science benefits people like them. Yet whereas only 59% of Western Europeans believe that vaccines are safe, 85% of north Africans do so.
In low-income countries, 81% of even those with low trust in scientists have confidence in vaccines. In rich countries, that figure drops to less than half.
Poor countries remain ravaged by diseases long eliminated from western nations. Globally, some 2.5 million children under five die every year from vaccine-preventable diseases. In countries such as Bangladesh and Rwanda, vaccination programmes have helped transform the lives of millions. In richer countries, medical advances, including vaccines, have been so effective that many no longer recognise their importance or the consequences of rejection.
There are, however, deeper problems than just a lack of historical memory. Trust is shaped by myriad social forces. Inequality is one.
According to the Wellcome report, the more unequal a nation, the greater the distrust of science. In both rich and poor countries, those whose lives are more precarious are more sceptical of science than those who say they are ‘living comfortably’, a trend particularly pronounced in rich nations.
There is also the question of the relationship between scientific and political trust. According to Wellcome, ‘The level of confidence people have in their national institutions – their government, judicial system and military – was a good predictor of their level of trust in science.’
Scepticism of authority is good. Too little scepticism allows those in power to maintain power. It also allows for the spread of disease when, for instance, there is an unwillingness to challenge religious authority. Indispensable to the project of creating a better, fairer society is the questioning of authority and of received wisdom.
Today, though, scepticism about authority has become an end in itself. Rather than leading to more rational views of society, it often drives people towards conspiracy theories about elites and experts and to believe in all manner of irrational claims. The anti-vax movement has exploited such scepticism to foster wild fears about vaccination.
And not just in Western nations. A study last year suggested that in the Democratic Republic of the Congo, nearly half the population thought an Ebola outbreak was being fabricated to destabilise the region or for financial gain. The result was Ebola ‘spreading under the radar’ as sceptics often evaded treatment.
Trust, or, rather, the lack of it, clearly shapes much of our political landscape. But it can also have a direct impact on physical wellbeing. From America to the Congo, distrust without reason can be matter of life and death.
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How France is persuading its citizens to get vaccinated
By Alex Whiting
19 Jun 2019
One in three French people think vaccines are unsafe, but across the country vaccine coverage is rising. Alex Whiting looks at how France is fighting back against vaccine scepticism.
In February this year, a holiday in paradise turned into a nightmare for one French family. Soon after their arrival in Costa Rica, their unvaccinated five-year-old son developed measles, the country’s first case since 2014. The parents, also unvaccinated, tested positive for the virus too. They were believed to have brought it from France.
The family were swiftly quarantined, and the Costa Rican authorities contacted people at risk. A few weeks later, two American children – again, unvaccinated – also developed measles in the country. Again, the authorities had to act quickly to contain it.
Measles is more contagious than Ebola, tuberculosis or flu, it has no specific treatment, and it can be picked up from the air or from surfaces for as long as two hours after an infected person has come and gone. Because it’s so infectious, health experts see it as an early warning sign that there’s a problem with vaccination coverage.
“Measles is like a canary in the mine,” says Heidi Larson, director of the Vaccine Confidence Project and a professor of anthropology at the London School of Hygiene & Tropical Medicine. To protect a population from measles, she says, at least 95 per cent of people need to be vaccinated – a higher threshold than for most other infections. This means that if vaccination rates start falling, “it’s going to be the first to show its ugly head”.
When last measured in 2017, Costa Rica had a vaccination rate of 96 per cent for the disease – a clear sign that its people shouldn’t have been at risk from each other. That same year, France’s measles coverage stood at only 90 per cent.
This isn’t surprising in light of the widespread concern about childhood vaccines in France. One in three French people think vaccines are unsafe – the world’s highest rate – and nearly one in five believe they aren’t effective – second only to Liberia. This is according to new data from the Wellcome Global Monitor, a worldwide poll of more than 140,000 people in 144 countries.
France may be on the extreme end, but it’s part of a global trend that has many health experts worried.
Trust in vaccination programmes is crucial to maintaining high immunity rates. But across the EU, people are delaying or even refusing vaccines, contributing to a rise in disease outbreaks.
Between 2010 and 2017, over half a million French infants didn’t receive a first dose of the measles vaccine. And last year, France was among the ten countries with the highest year-on-year increases in measles, with confirmed cases jumping from just over 500 in 2017 to nearly 3,000 in 2018.
According to the World Health Organization (WHO), reluctance or refusal to vaccinate is now one of the top ten major threats to global health. One manifestation of this is that even people in high-income countries, with good healthcare systems, are dying from easily preventable diseases. More than 70 people died of measles across Europe in 2018 – three of them in France.
“It’s a tragedy for Europe that a child or an adult has died because of a preventable disease,” says Patrick O’Connor, a team lead in WHO Europe’s Vaccine-Preventable Diseases and Immunization programme. “We owe it to them to protect them.”
A critical mass of unvaccinated people produces a wildfire effect, O’Connor adds. “Next year it could be diphtheria, or a variety of things.”
“The good news is that a lot of people who are sceptical, who don’t think vaccines are safe, still vaccinate their children,” says Hania Farhan, senior director of methodology at Gallup, which carried out the Wellcome Global Monitor poll.
This is true for France, where vaccine coverage rates exceed levels of trust. But the spike in measles shows that, for some diseases, coverage still desperately needs to improve.
© Luke Best at Heart Agency
“It’s all about money for the pharmaceutical companies,” says Priscille, a young mother who lives in Paris. Like many French parents, she is unsure about vaccinating her child. The 25-year-old doubts the effectiveness of injections, and is worried about damaging her baby’s immune system, even though there’s no evidence to support these fears.
“I think the immune system builds itself, and if it’s broken somewhere, it becomes complicated,” she says, holding her daughter, Madeleine, in the family’s apartment.
“Maybe the basic idea of a vaccine is very good,” she adds, “but the vaccines we have today are not good enough.”
This lack of trust in vaccines, despite overwhelming evidence that they are safe and effective, can be traced at least in part to the French government’s mishandling of a series of medical scares.
A blood transfusion scandal rocked the country in the 1990s. In the previous decade, thousands of people had been given blood contaminated with HIV – most of them before the link between blood, HIV and AIDS was fully understood. Many of those who received contaminated blood died.
Global headlines screamed “Transfusion of Death” and “Blood Scandal Ministers Walk Free” as the world’s media tracked it for nearly a decade.
Former health minister Edmond Hervé was convicted for his role in two people being given HIV-tainted blood, though he was spared a sentence. He was alleged to have delayed introducing a blood-screening test developed by an American firm until a rival French product was ready for market.
On the heels of this scandal came reports from medical professionals who claimed to have developed multiple sclerosis after receiving the hepatitis B vaccine. Although the WHO investigated and concluded there was no evidence of a link, the government suspended its school vaccination programme and promised to investigate in a bid to calm public outcry.
“But suspending it also raised suspicions,” says Heidi Larson.
Then in 2009, controversy around vaccinations to protect against the H1N1 flu pandemic led to an “absolute, total breakdown of trust,” Larson says.
France had ordered 94 million doses of H1N1 vaccine at a cost of almost 1 billion euros. It was enough to inoculate about 80 per cent of the population with two doses. But by the time the bulk of the vaccines had been delivered, it was realised that only one dose was necessary, and in any case the pandemic was less dangerous than initially thought. By the end of the vaccination campaign in January 2010, less than 10 per cent of the population had come forward for vaccination, and the government was trying to cancel or sell off its surplus supplies.
“The public was angry at the WHO for what they thought was overinflation of the risk, angry at the government for having bought so much vaccine,” Larson says.
The percentage of people who were favourable towards vaccinations fell from 91 per cent in 2000 to 61 per cent in 2010, according to national health agency Santé publique France. By 2016 it had recovered somewhat, but only to 75 per cent.
Until the late 1980s, the French media rarely covered health-related scandals. Journalists focused on the great achievements of medicine and relied almost exclusively on bigshot professors at big universities, says Jeremy Ward, a researcher on vaccine hesitancy at the VITROME laboratory in Marseille.
“The HIV epidemic and the blood transfusion scandal changed everything,” says Ward. Newspapers invested more in their health coverage, looked for scoops and controversies, and reported on the experience of patients.
More recently, and as in many other countries, social media has enabled scare stories and misinformation about vaccines to spread fast. The Facebook group Info Vaccins France, for example, has a series of testimonies from parents saying their children either died or became seriously ill following routine inoculations.
Part of the problem is that if just one person in several million has an adverse reaction to a vaccine, their story will spread and inflate on social media with no wider context, one Paris-based doctor says.
Some of those online are campaigning for freedom to choose whether or not to vaccinate. Others are seeking to counter what they say is a conspiracy of silence around the ill-effects of vaccines.
Some are even doctors themselves. Henri Joyeux, a former surgeon and an honorary professor of oncology at the University of Montpellier, has been a leading campaigner against injections containing aluminium. It’s used in some vaccines to boost the immune response and make a vaccine more effective and long-lasting.
Joyeux, who was nearly disbarred from the medical profession for his views against vaccination, launched a campaign against Infanrix hexa – the six-in-one children’s vaccine – in 2016. It’s since got over 1 million signatures.
Vaccinations against some diseases – like polio, diphtheria and tetanus – are important, he says. But his complaint against Infanrix hexa is that it contains aluminium and formaldehyde, “dangerous substances for humans and especially infants, which can cause a serious disease, macrophagic myofasciitis”. Infanrix hexa, he says, also contains “the hepatitis B vaccine suspected of being linked to multiple sclerosis”.
His campaign materials go on to say: “In addition, vaccinating children against six serious diseases at once is a risky medical procedure that can trigger an uncontrolled immune response (anaphylactic shock) and increase the risk of autoimmune disease in the long term.”
The scientific consensus – across the European Medicines Agency, the Vaccine Knowledge Project, the UK NHS and others – is that Infanrix hexa is safe.
“There’s a lot of pretty negative, discouraging and sometimes quite frightening material about immunisation on websites,” says Larson, and aluminium “is the big scary bogeyman for France”.
O’Connor at the WHO says it’s an issue that medical professionals are battling worldwide. “The fervent or militant resistors are very loud on social media and other forums. People pick that up and then they have lots of questions.”
In response, French health bodies have put out information on social media platforms including Twitter, Facebook and LinkedIn. They have funded YouTube videos like ‘Nine bullshits on vaccines’, which has had over 350,000 views in 18 months, and sometimes they engage directly in online chats.
Following a recent measles outbreak, a representative from Santé publique France introduced himself to mothers chatting on Doctissimo, a website set up by two doctors to spread reliable information about health. He reminded the mothers of the rules around vaccines and answered their questions and concerns.
“It is a lot of work,” says Sylvie Quelet, director of health promotion and prevention at Santé publique France.
“It is very important that communication around vaccination continues and is always present vis-à-vis fake news,” she says. “The battle is not won.”
© Luke Best at Heart Agency
“All my patients have concerns about vaccines,” says Véronique Dufour, a paediatrician and vaccine expert. “Vaccines are intrusive, so it’s normal for them to ask questions.”
Dufour is the deputy chief physician of the Paris maternal and infant protection centre. There are similar centres dotted across France, providing medical education and support for children, mothers and pregnant women.
She says her job has become much easier since the government increased the number of mandatory vaccines from three to 11 in January 2018.
Previously, the three vaccines that were mandatory – diphtheria, tetanus and polio – had good immunisation rates of 95 per cent or higher. But eight other vaccines, including measles, meningococcal C and hepatitis B, had only been recommended – and coverage was lower. Now, unless they have a medical exemption, children need to have had all 11 of these vaccines to attend a state-run school.
“People are asking fewer questions. Very, very few are not vaccinated,” Dufour says.
Doctors say the change in law has sent a clear signal to the public that all vaccines are important.
Early signs are that confidence in vaccines is rising since the law change. A small study of parents with young children carried out in February this year found that 91 per cent think vaccination is important for their children’s health, and 87 per cent think it is important for protection of the wider population. Both figures show a 5 per cent increase since a similar study was carried out in June 2018.
Vaccination rates have also increased. The percentage of babies receiving the first dose of meningococcal C vaccine rose from 39 per cent in 2017 to 76 per cent in 2018. In the same period, vaccination rates for hepatitis B, human papillomavirus (HPV) and measles also modestly increased. France aims to achieve 95 per cent coverage for all vaccine-preventable diseases except flu, where the target is 75 per cent.
The new law arose out of a major consultation to look at how to restore confidence in vaccines and improve immunisation rates. The government launched the consultation in 2016, and it involved both citizens and medical professionals.
“There was a confusion between mandatory and recommended vaccines. People understood that if it was recommended, it wasn’t so important,” says Magid Herida, a senior vaccine expert at the Ministry of Health.
The consultation also suggested setting up a website for the public with information about vaccines – vaccination-info-service.fr – which now has around a quarter of a million unique visitors a month. A more in-depth website has been established for health professionals.
The Ministry of Health is also considering ways to make the vaccination process simpler. In most cases, parents have to get a prescription from their doctor, buy the vaccines from a pharmacy and store them in their fridge, and then book another appointment with a doctor to receive the injection.
Mandatory vaccination is one of the most successful ways of increasing immunisation rates, according to the WHO. Indeed, France is not the only EU member to mandate large numbers of childhood vaccines. Others include Italy, Hungary, Bulgaria, Croatia, Czech Republic, Latvia, Poland, Slovakia and Slovenia.
But the WHO warns that this approach can also provoke vaccine hesitancy – “not necessarily because of safety or other concerns, but due to resistance to the notion of forced vaccination”.
“Taking away freedom of choice can easily appear authoritarian,” says Jeremy Ward at the VITROME laboratory. In France’s highly politicised environment, he says, this could prompt a minority who were previously hesitant to become rampantly antivaccine.
There might also be an increase in the number of children being given medical exemptions, Ward adds, which are supposed to apply if a child is allergic to eggs or if their immune system is too fragile. “There are doctors in France – as in all other countries – who provide fake medical exemptions.
“When you talk to people who work in private schools, many tell you a lot of children are not vaccinated and the school directors don’t check,” Ward says. For some parents, this makes private schools more attractive.
Parents like Priscille plan to keep their children away from public nurseries and to send them to alternative schools that are outside the state education system.
“I’m lucky because I don’t work, so I don’t have to put them in the crèche, so I have the choice over vaccines,” she says.
Laws are relatively quick to change. Attitudes and behaviour may take longer.
Sitting in a café near Notre-Dame cathedral, the day after it was devastated by fire, paediatrician Sydney Sebban says doctors have to take the time to build trust with parents.
He starts to do this when they bring their babies in for the first time at 15 days old, and he asks them about vaccinations, alongside feeding and sleeping. It’s a matter of listening to their questions, taking time and giving them quality information, he says.
“I say to them there is no product which has zero risk. It doesn’t exist. People must think about side-effects of ibuprofen or antibiotics.”
“And I ask them: ‘How was it when you were vaccinated, what happened, how did you feel?’”
He encourages the parents to talk to their parents and grandparents about illnesses that have been forgotten since widespread immunisation began.
“You can wait, but not too much, because the main purpose of the vaccination is to protect the child before they are exposed to the risk. If you are getting close to the exposure, it’s too late.”
Unless vaccination rates are sustainably increased, diseases such as measles will continue to spread in Europe, says the European Centre for Disease Prevention and Control.
“The most devastating consequence of vaccine hesitancy, or inadequate vaccine uptake, would be a resurgence of fatal or life-changing vaccine-preventable diseases which are currently well-controlled, or are targeted for elimination,” says the centre’s chief scientist, Mike Catchpole.
All in all, most experts say the public need to be reminded that vaccines protect lives from killer diseases that few people in Western countries have any experience of.
“Vaccines are one of the best public health interventions that we have, and they work. We just have to make sure people understand that,” says O’Connor.
Among officials, doctors and academics, there is a cautious optimism that France will continue to see a rise in immunisation rates.
“France can bring down the levels of scepticism with some extraordinary efforts,” says Larson. “But I think it’s never going to fully go away.”
