Nicky Normington, a health manager in Sheffield in the north of England, got a crash course in the destructive power of health misinformation. After the Covid-19 vaccine was given the green light in late 2020, the police insisted on conducting “a comprehensive audit” of the building earmarked by Normington and his team as an immunisation centre. They needed to assess “which windows could be broken by people trying to destroy the vaccine” before the business of saving lives could begin. While he never felt actively threatened, the climate was tense, the managing partner at a family doctors’ practice recalls. During one large drop-in clinic held in the city’s famous Crucible Theatre, “a lady came around and started handing out anti-vaccine leaflets to all the people waiting, [saying:] ‘It’s not been scientifically proven.’ And when we asked her to leave, she became violent and the police came and took her away.” Five years after the start of the pandemic, some medical professionals fear that a loss of trust in healthcare workers and institutions has become one of the most potent negative forces in healthcare — as powerful a factor in predicting health status as more conventional “social determinants” such as nutrition and poor housing. Habib Naqvi, who heads the London-based NHS Race and Health Observatory, which seeks to combat inequalities in health and healthcare, says: “Trust is fast becoming a determinant of health itself and a predictor of people’s choices as to whether or not they take part in medical interventions.” Conspiracy theories that Normington encountered ranged from the notion that “the government wanted to inject certain people to try and cull the population” to the idea that vaccines were responsible for cardiac arrests and kidney disease. In the US, these kinds of demonstrably inaccurate claims are moving from the margins into the mainstream. Robert F Kennedy Jr, among the most senior health officials in the US as secretary for health and human services, has publicly questioned the safety of vaccines. His department recently appointed David Geier, a longtime vaccine sceptic, to examine the link between autism and immunisation, despite an extensive body of research that has conclusively ruled out a connection. Ashish Jha, who co-ordinated the White House’s response to Covid under President Joe Biden, before returning to his role as dean of the school of public health at Brown University, says: “You have somebody running America’s health department who looks at issues with strongly held preconceived notions and is undeterred by evidence, data and science. That’s a very hard moment.” The breakdown in trust engendered by misinformation is already having deadly consequences. Among the most tangible signs of the harm it can cause is the sharp rise in measles cases in parts of the world. It also affects people’s willingness to undergo preventive screening, and take part in clinical trials and medical research. If trust cannot be built or restored, the consequences for public health will be profound, experts believe. It may create a reinforcement loop in which those who already feel alienated from the healthcare system are less likely to access life-changing innovations, deepening the gulf between the medical haves and have nots. In an era when the world is discovering “a whole bunch of vaccines against all these diseases that we just did not think we could conquer,” Jha says, the risk is of “a further divergence between people who do trust the system . . . benefiting enormously, and more and more people being left out”. Mistrust in medicine did not begin with the pandemic. For those in minority communities, suspicion of medical institutions often goes back decades or even centuries, rooted in historical prejudice. For a long time, for example, Black people were wrongly thought to have a higher pain threshold, notes Naqvi, meaning conditions such as endometriosis often went untreated and they were sometimes expected to undergo operations without anaesthetic. Clinicians themselves may be unwitting purveyors of misinformation, suggests Joel Bervell, a medical school graduate who was one of just a handful of Black students in his class and styles himself as a “medical mythbuster” on social media. Race, he says, is a social construct and cannot be discerned from someone’s genes. “Yet in the healthcare field, we don’t treat it like that.” For many years calculations used to measure kidney and lung functioning, for example, falsely assumed differences based on race. The danger of this approach is that it could lead to under-treatment — and even mean Black people being less likely to qualify for lung or kidney transplants than their white counterparts. Naqvi adds: “We define trust as ‘truth told consistently over time’. If there is a breakdown in any part of that algorithm, communities latch on to that and there is a collapse in confidence.” Women queue to be tested for Covid-19 in the US in 2020. For those in minority communities, suspicion of medical institutions often goes back decades or even centuries © Rebecca Cook/Reuters Ann Gregory, a nurse at the Page Hall medical centre in Sheffield, spends her days trying to nurture fragile bonds of trust with local people, particularly a large population of Roma descent. But she is often swimming against a tide of misinformation rooted in past searing experiences. In Slovakia, women seeking advice about contraception might have been sterilised or fitted with a coil against their will, she notes — a generational trauma that still colours their descendants’ attitude to healthcare and the people who provide it. But the crisis of trust in health providers also has more contemporary causes. The forces that are buffeting and changing healthcare systems as they attempt to meet soaring demand with limited budgets is a significant factor in fraying those bonds, experts believe. One example is the fragmentation of the health workforce, says Martin McKee, professor of European public health at the London School of Hygiene and Tropical Medicine, who last October co-led a study into the role of trust in health systems. The introduction of an array of lower-qualified roles such as physician associates have “undermined the traditional doctor-patient relationship”, he says. Leigh Sorsbie, a GP in the north of Sheffield, says that, with family doctors in short supply, there is increasing pressure for GPs to prioritise access over continuity of care, making it far harder for a patient to forge a trusting relationship with a familiar doctor. In the US, the process of countering mistrust is complicated by the “financial toxicity” of a system in which many are driven into medical debt, says Brown’s Jha. He adds: “It’s hard to trust an institution that you went to when you were very sick and vulnerable, and now you are going to be bankrupt.” If the ties between healthcare professionals and patients were sometimes weak going into the pandemic, Covid loosened them yet further. As governments battled to keep their populations safe amid a fast-moving health crisis, messaging strategies sometimes served to undermine trust. Zak McMurray, a GP in Derbyshire, recalls his discomfort at seeing NHS leaders sharing the platform with politicians during the daily coronavirus briefings held at 10 Downing Street, home of the UK prime minister, when the pandemic was at its height. This apparent close alignment undermined confidence that doctors’ recommendations were independent and evidence-based, he suggests. Another powerful mis-step, argues Jha, was the widespread injunction that people should avoid attending church to prevent the spread of the virus, with cherished acts of worship casually denigrated as “superspreader” events. “I’ve talked to a lot of conservatives about why they lost faith in public health. A lot of them point to the fact that we didn’t acknowledge and understand the sanctity of religion and of social bonds, and we treated the pandemic very clinically.” While much consideration has gone into widening racial and ethnic diversity in the medical and public health workforce, far less attention has been paid to “religious or social diversity”, including political affiliations, he adds. “I think we often in medicine and public health focus way too narrowly on the clinical issues. And people live bigger lives.” A Covid vaccine clinic in Sheffield in 2021. Critics say government messaging strategies during the pandemic sometimes served to undermine trust between health professionals and patients © Oli Scarff/AFP/Getty Images The biggest shock for many health officials during the pandemic was the speed with which the debate over how to keep populations safe descended into partisanship. Pre-coronavirus, the US state which had the highest childhood vaccination rates in the country was ruby-red Mississippi while true-blue California had among the lowest, Jha recalls. “So there was really not a political divide. Republicans and Democrats in general were very pro-vaccine. And that’s what breaks my heart, because once you tie vaccinations to political identity, it becomes very, very hard to operate.” What broke this consensus, he suggests, was the decision by the Democratic administration to impose vaccine mandates to try to stop the spread of the virus. While many Republican governors did secure “fantastic vaccination rates because they knew that was the right thing to do for their people, there were others who were tempted by using this as a political wedge issue, and I think the consequences of that are that it has become way more partisan than ever,” he adds. A “trust barometer” published last month by Edelman, a public relations consultancy, showed that in Brazil and the US, left-leaning respondents grew more trusting of health authorities and the right less. The lasting impact of Covid, suggests Courtney Gray Haupt, US health chair for Edelman, was that as trust in institutions declined, political polarisation increased. “This has evolved into a landscape of heightened grievance and greater divisions across political lines — and in which leaders and institutions you trust.” If I go from good health to very bad health, my chance of voting populist radical right goes up dramatically This was particularly notable in the US and Brazil, which reported the highest levels of grievance against government, business and the rich as a result of the pandemic, she adds. In the case of health, disenchantment with care may spill over into dissatisfaction with mainstream political parties, research suggests. Scott Greer, professor of health management and policy at the University of Michigan, was part of a team at the European Observatory on Health Systems and Policies, which has found a clear link between ill health and a tendency to support populist movements. Greer says: “If I go from good health to very bad health, my chance of voting populist radical right goes up dramatically.” Between 2002 and 2020, aggregate data in 24 different European countries showed support for rightwing populists stood at 12 per cent among people reporting “very good” general health — and nearly 20 per cent among those in “very bad” health. The relationship remained after accounting for many demographic, socio-economic and political characteristics of respondents. Greer said the finding, which had “blown [him] away” with its consistency across countries, pointed to the urgent need to change the way health professionals were interacting with chronically ill patients who often experience “stigma and discrimination”. He adds: “It’s not like being diagnosed with diabetes naturally turns you into a conspiracy theorist. But being diagnosed with diabetes, and being mistreated by the healthcare system, and having your employer mess you around diminishes your trust in society.” His advice? “Think hard about the ways in which your handling of people when they fall into ill health is undermining their trust.” Ironically, backing for populist administrations may run directly counter to supporters’ hopes of better care, argues McKee. The study he co-authored, also published by the European Observatory, says that populist politics and political leaders represent “a threat from within, as many directly undermine trust in health and health systems, and actively look to cut public funds rather than invest in the transformation agenda required to strengthen health systems”. For governments and health systems grappling with these difficult new realities, India offers a triumphant example of what can be achieved when the community is successfully enlisted as a partner in countering misinformation. Hamid Jafari, who today is director for polio eradication at the WHO for the eastern Mediterranean region, says that when he and his team started work around 2004, they faced “trust issues” over the vaccine against the disease, particularly in western Uttar Pradesh. To overcome this resistance, vaccination teams identified influential figures in each community to vouch for the immunisations, answering questions or allaying fears. It was also important that local vaccinators and their supervisors, and as far as possible, local medical officers, were recruited from the same areas “so there wasn’t that disconnect that an unfamiliar, unknown Hindu vaccinator is showing up in a Muslim village”, he says. By 2011, the disease had been all but eradicated in India. While the context may be very different, he believes that lessons the programme taught about how to build trust are transferable to countries such as the US and the UK. “What happened with Covid in the industrialised countries was a very severe hardening of positions and opposing views,” Jafari says. “Those who had concerns about the vaccine and its safety were being labelled as ignorant, as stupid [and] uneducated.” It’s vital that people are “heard respectfully” and have access to helplines where their concerns can be addressed, he suggests. Bervell, the public health influencer, extols what he calls “pre-bunking”: giving people the tools to recognise when a false claim is being made. He tries to do this, both through his TikTok and Instagram posts, and a podcast, and in dealings with his own patients. “It can be looking at how you identify conspiracy thinking, or how do you find someone that’s impersonating what a credible source looks like?” There is always a kernel of truth within misinformation, he says: “That’s what makes it feel like it’s real.” Bervell adds: “Sometimes the goal isn’t to win the argument, but at least to plant the seed of truth and encourage critical thinking.” For some health leaders, this may require a change of perspective and a degree of humility. Brown’s Jha notes that professionals tended to spend a lot of time thinking about information supply: how do we get better information so they trust us? A child receives a polio vaccine in Mumbai. A programme that recruits vaccinators locally to foster trust with communities has seen the disease all but eradicated in India since 2011 © Praful Gangurde/Hindustan Times/Getty Images Instead a greater focus on information demand was required, he argues. “We have to understand what is the information people need? Why are they distrustful? What’s driving it? . . . This is going to take deep engagement with communities, with community leaders as partners,” he says. On the healthcare frontline in Sheffield, Normington and his team are finding this kind of engagement must be undertaken discreetly, carefully, and patiently. A practice nurse will contact parents up to five times in an attempt to persuade them to have their children immunised. They stick to scientific rather than emotional arguments, aware that they must do nothing to jeopardise their broader relationship with the family, says Normington. It can be a thankless endeavour. “A lot of the patients have got as much ‘information’ in terms of how harmful these vaccines are as we’ve got information that they’re not harmful. So it’s a difficult conversation to have.” Changing minds is not an exact science, Normington suggests, but the benefits when a “no” is converted into a “yes” are so significant that he and his colleagues cannot afford to give up. “As a practice, we feel that we’ve got to do everything to try and get the childhood vaccinations in,” he says. Data visualisation by Keith Fray