Infodemiology: monitoring & managing vaccine misinformation

In the heat of the SARS-CoV-2 pandemic in spring 2020, false and misleading claims were rife. This was unsurprising: uncertainty is fertile ground for rumours and misinformation. The early confusion ‒ along with the circulation of malicious falsehoods ‒ were a taste of things to come. The rollout of the COVID-19 vaccine saw a huge spike in online interest in vaccines, and a surge in the circulation of inaccurate information.

In the early months of the pandemic, the World Health Organization (WHO) framed the challenge as an infodemic, a term that caught the imagination and spread quickly. ‘We’re not just fighting an epidemic; we’re fighting an infodemic,’ said Dr Tedros Adhanom Ghebreyesus, WHO Director General. ‘Fake news spreads faster and more easily than this virus, and is just as dangerous.’

It was a bold statement and it moved health information to centre stage. For its part, the WHO ran Infodemic Management training courses to improve countries’ capacity to respond to an (mis)information crisis. Governments started taking the problem more seriously, infodemic research projects began to pop up, and consulting companies pivoted into a dynamic new market.

All of this pulled together public health doctors and epidemiologists, social sciences and behavioural change experts, communication specialists and social media analysts. A new field of study was born.

That, at least, is how it seemed to the public and to most observers. However, fittingly enough, the truth is a little less dramatic and a little more complex than all of that.

Infodemiology is a research discipline that studies the spread of information and the impact on public health

Dr Joe Smyser is a public health expert who has worked at the US Centers for Disease Control & Prevention (CDC). As CEO of Public Good Projects (PGP), he has been working with health departments across the United States ‒ and with international organisations including UNICEF ‒ to identify and manage information and misinformation. It is, for the most part, a slow, steady and methodical process, notwithstanding the occasional infodemic.

Smyser prefers to view Infodemiology in the way that public health people think about epidemiology: the study of issues that can have a major impact on populations. Infodemics, on the other hand, are like epidemics ‒ outbreaks that require a crisis response.

‘Infodemiology is not new,’ Smyser told Vaccines Today. ‘It predates the pandemic by about 20 years.’ The field was founded by Dr Gunther Eysenbach, a medical doctor who specialises in health informatics.

‘Eysenbach and others recognised the need for a research discipline in public health that studied the spread of information and the impact of this information,’ Smyser explained. ‘What made it unique at the time was its blend of data science, epidemiological methods and a public health ethos.’

Image from infodemiology.com’s May 7th report on Bird Flu. Available here

When the term ‘infodemic’ was co-opted by the WHO, it was a means of mobilising a crisis communication response. ‘There was a huge spike in true and false information related to the pandemic,’ Smyser recalls. ‘By framing it as a crisis, it became possible to get buy-in, to mobilise experts and run training. Several parallel efforts kicked off around the same time.’

But as the acute phase passed, Smyser and others began to think of what might come next. What they did not want was for momentum to be lost when the emergency faded. In 2020, PGP and UNICEF co-founded the Vaccination Demand Observatory to scale up rumour tracking and response capacity in several countries. PGP still works with UNICEF, as a partner in its global polio response.

In 2024, PGP, the American Public Health Association, de Beaumont Foundation, and a host of other partners, launched Infodemiology.com. Their shared aim was to build a ‘community of practice’ in the field which could be integrated into public health systems. In practice, this would mean developing a website to serve as a hub of training courses, as well as monitoring tools ‒ in partnership with Talkwalker, a ‘consumer intelligence platform’ that can be used for tracking public health issues, regular reporting, and other news and information shared in the community of practice.

‘Every Fortune 500 company uses these kinds of tools, as does every media company that needs to understand what the public wants,’ Smyser said. ‘And yet the majority of health systems do not know what people are saying online; they have no information about narratives driving key public health issues. I cannot see an argument against using these approaches in a way that is responsible, ethical and collaborative.’

An example of an Infodemiology Talkwater Dashboard tracking vaccine-related issues in New York state.

Turning insights into action

By bringing together a wide group of high-level experts and organisations in infodemiology, the initiative can fill one of the most important gaps that has emerged since the pandemic: training public health staff to choose the right monitoring tools, to use them to meet their goals, and then to turn intelligence into action.

There are now several ways to find out what’s driving online conversations ‒ including dashboards such as Project VCTR that highlight emerging rumours ‒ but healthcare workers and public health experts need to know what to do next. If a specific rumour is taking hold in a certain community or locality, how should it change how doctors speak to parents? How can officials adapt their programmes or tailor communication campaigns?

‘We provide very different training for frontline healthcare professionals who need shorter, actionable training focused on, for example, conversations with patients,’ Smyser explains. ‘Longer courses of about one hour are available for public health people who have very different needs and greater appetite for theoretical contexts. In both cases, we’re providing them with actions they can take based on the best available evidence.’

In some instances, no action is required, but awareness of bubbling issues can still be of value. ‘Our experience working with partners at UNICEF offices around the world tells us that public health departments need definitions and protocols to guide them,’ he says. ‘We often train people to assess a rumour as green, yellow or red. Green issues are typically those that occur all the time in the background; Yellow may warrant a response, even if it’s just notifying internal colleagues; Red could warrant a more proactive, public response.’

Misinformation as a public health challenge

It must be stressed that Infodemiology is not only about vaccines. In fact, Infodemiology.com is already monitoring vaccines, opioids, mental health and reproductive health issues, and plans to expand further. Fifteen subjects will be tracked, in line with the priorities of public health organisations such as WHO and the US Department of Health & Human Services, which includes the US CDC, the Food & Drug Administration (FDA), and the National Institutes of Health (NIH).

‘We pay attention to public discourse around multiple issues, not just infectious diseases,’ Smyser said. ‘But there’s nothing like the vaccine conversation: There is still a massive amount of heavily politicised, overtly untrue, information about vaccines and vaccination.’

Beyond the US, Smyser continues to engage with UNICEF country offices and has had meetings with European authorities to explore ways that health systems can use infodemiology tools.

The key message is that infodemiology is becoming a central component of public health infrastructure. It can be used to positive effect not only in times of crisis, but in times of calm. Just as epidemiologists’ day-to-day work involves disease surveillance, public health officials can track information that impacts wellbeing and respond accordingly.

‘While disinformation was seen as a major threat to vaccination programmes during the pandemic, it may often have been our failure to address the perfectly reasonable questions and concerns about vaccination that the public were voicing which led to public inertia to get vaccinated,’ said Dr Angus Thomson, Principal and Senior Social Scientist at Irimi, a behavioural design organisation.

If the drive to integrate infodemiology into routine public health work is successful in ‘normal’ times, the system will be more resilient to major crises when they occur. Furthermore, public health communicators will be better equipped to tailor communications to current, and local, vaccine perceptions and concerns.