As the whole world puts its hope in a coronavirus vaccine, medical research has never felt so vital. But there’s also been a wealth of dangerous misinformation during the pandemic. Natalie Healey explores how life-saving science could be communicated more effectively
Bad memories are more likely to stick than the good ones, which is unfortunate when it comes to medical research. Who could forget the UK’s disastrous ‘elephant man’ clinical trial in 2006, which left six previously healthy men fighting for their lives in intensive care?
The experimental therapy TGN1412 for autoimmune diseases triggered projectile vomiting, severe pain and head swelling. Within minutes of taking the drug, the participants described feeling like their brains were ‘on fire’ and their ‘eyeballs were going to pop out’. It was a low note for public trust in clinical trials.
And perhaps it never recovered. A 2017 survey from the Academy of Medical Science found that just over a third (37%) of the public trust evidence from medical research, compared with approximately two thirds who trust the first-hand experiences of their friends and family.
But communicating the benefits of medical research to the public is as vital as drawing its attention to occasions where things go wrong. Without health research, we wouldn’t have made countless medical breakthroughs. Many diseases that can now be managed with medication, such as HIV and type 1 diabetes, would still be seen as death sentences.
Science needs people to believe in it, because getting potentially life-saving medicines or vaccines to market depends on volunteers coming forward for trials. And above all, trust in scientific evidence helps people make more informed judgements about their own health. As the planet grapples with the spread of a new coronavirus that causes COVID-19, public faith in medical research is needed more than ever.
When people trust in science, they will be more willing to comply with control measures that are key to slowing the spread of disease
“During public health crises, trust in medicine becomes vital,” says Cary Wu, Assistant Professor of Sociology at York University in Toronto, Canada. “When people trust in medical research, health officials and political leaders will be more able to transfer the research findings and knowledge into public practice.”
Guidelines from the World Health Organization written 15 years before the coronavirus crisis state that when people trust in science, they will be more willing to comply with control measures that are key to slowing the spread of disease, such as lockdowns, mask-wearing and strict hygiene practices.
British science communicator Kat Arney believes the pandemic has emphasised the value of explaining complex concepts accurately and engagingly. “Helping people to understand the world around them and their place in it is incredibly important,” says the former Cancer Research UK communications manager and author of Rebel Cell: Cancer, Evolution and the Science of Life. She believes scientists, politicians and the media all have a responsibility to convey health information as truthfully and straightforwardly as possible.
“It is vital to have consistent messages from credible, trustworthy sources”, agrees Science Communication Professor Nancy Longnecker from New Zealand’s University of Otago. She points out that her country’s prime minister Jacinda Ardern has been praised around the world for her response to the coronavirus crisis – and for using clear, consistent, empathetic communication throughout.
But alongside sensible advice, there have been plenty of muddled messages from high-profile figures. In a press briefing in April for instance, US President Donald Trump pondered whether injecting disinfectant into the body could clear it of the virus. He later claimed it was a sarcastic quip but many people took his words at face value. Shortly afterwards, there was a spike in people ingesting deadly cleaning fluids.
There has also been much controversy surrounding hydroxychloroquine, a malaria drug most people hadn’t heard of until Trump announced he was taking it to prevent COVID-19. The president isn’t the only one to blame for the confusion regarding this medication though. In May, a study in prestigious medical journal The Lancet suggested the use of hydroxychloroquine for treating the coronavirus increased the risk of heart problems and early death. But public health experts soon noticed problems with the data used, leading to the study being swiftly removed from the journal. But the damage was already done – several trials looking into the efficacy of hydroxychloroquine in COVID-19 had been halted after the publication of the now-dubious research.
It’s not the first time The Lancet has been the subject of contention. In 1998, it published infamous research linking autism to the MMR vaccine. The findings have now been thoroughly debunked, but media coverage of the possible connection had lasting damage, leading to a continuous decline in vaccination rates. In August 2019, the UK lost its status as a country that had eliminated measles, due to increasing numbers of parents choosing to skip routine immunisations for their kids.
DEVELOPMENT OF A COVID-19 VACCINE
Clinical development of a vaccine is usually a three or four stage process.
The trial vaccine is given to small groups of people
The study expands to those with higher susceptibility to COVID-19
Vaccine tested for safety and efficacy amongst thousands of people
Ongoing studies monitor the vaccine after is has been approved and manufactured
Vaccines are back in the news for a different reason. Researchers around the world are currently racing to develop one against COVID-19. It has been suggested that the pandemic could be the day of reckoning for people who usually shun immunisations – turning the tide on the so-called ‘anti-vaxxer’ movement. Arney isn’t so sure though. “I’m quite pessimistic about this,” she admits. According to a July YouGov survey, nearly one in six Britons will refuse a coronavirus vaccine if and when one becomes available.
To a vocal minority, medics and the pharmaceutical industry have long been seen as the villains. Events like the TGN1412 trial certainly haven’t helped. And at times of heightened anxiety, misinformation is even more likely to thrive, with social media its perfect vehicle. WHO’s Director-General Tedros Adhanom Ghebreyesus announced in February that fake news “spreads faster and more easily than this virus”, fostering distrust of genuine medical advice. Unsurprisingly, research from King’s College London has found people who believe in conspiracy theories are less likely to follow lockdown rules. After all, if you don’t believe the experts, why would you follow their guidance?
The problem with hope
Researchers must quash unhelpful rumours, but putting science on a pedestal is problematic too, says Arney. The UK Government justified its actions and guidance during the pandemic on the basis that it was being ‘led by the science’. But this simple phrase has its limitations. While science is the best method we have for understanding the world, that doesn’t mean researchers always have the answer – or that new evidence won’t emerge and force guidance to change tack.
“This argument from authority that scientists are heroes is a terrible idea,” Arney says. “Public trust will suffer when you’re not confident to say ‘we don’t know the answers’, or ‘actually, we got this wrong’.”
It’s important to be realistic too. In March, British newspapers ran headlines proclaiming that a coronavirus vaccine could be expected by September 2020. But, even in such urgent times, medical research rarely operates so fast. Ensuring the safety and efficacy of a treatment or vaccine takes a huge amount of work. The typical timeframe to get a new vaccine to market is around a decade. The Ebola vaccine became the fastest developed immunisation ever, but still took five years to get there.
“John Cleese says in the film Clockwise: ‘It’s not the despair; I can cope with the despair. It’s the hope – that’s what’s killing me’,” says Arney. “Scientific research is going to get us through this. But misplaced hope is really unhelpful.”
Rising to the occasion
Perhaps there is some cause for optimism though. COVID-19 has ensured that medical research is never far from the public consciousness. And, in many countries, high-ranking health experts have become as high profile as certain politicians.
“I think the pandemic has been and will be a great opportunity to improve public understanding of medicine,” says Wu. “People all over the world have been reading more news and research about the coronavirus, watching more videos about medicine and science and listening to what doctors and researchers say.”
In order to harness that opportunity, science needs to be communicated accurately and transparently by anyone with power and influence. And that means admitting that there are some things we just don’t know yet. Arney believes the scientific community also has a duty to engage with people who distrust medical advice. Find out why they feel that way before you dismiss their views, she suggests. And always assume people are acting out of fear, rather than bad faith.
“We all have a story in our heads of how the world works. And when you come along and say someone is dumb, wrong or evil, that’s not helping. You’re attacking their fundamental story,” she says.
“I think it’s up to everyone in the community to act with integrity and that doesn’t mean calling out and getting angry. Instead, we should all commit to doing better.”