This Policy Meeting report examines how online vaccine misinformation can be better countered. Presented at the 11th Excellence in Pediatrics Conference in December 2019, it brings together expert briefings on the need for evidence-based credible information and vaccinology training, how healthcare professionals can engage effectively on social media, and interventions from the WHO, CPME and EPSA, alongside country experience from Latvia and Serbia and a proposed action plan for 2020/2021.
Meeting Report
Policy Focus Group Meeting on Misinformation — 11th Excellence in Pediatrics Conference, 6 December 2019
Marc Van Ranst1, Philip Weiss2, Katrine Habersaat3, Liudmila Mosina3, Jacques de Haller4, Tilen Kozole5, Dace Zavadska6, Radovan Bogdanovic7, Paolo Bonanni8, Aubrey Cunnington9, Simon de Lusignan10, Simon Kroll11, Zsofia Meszner12, Irena Bralic13, Gary Finnegan14, Mihai Craiu15, Mira Kojouharova16, Timo Vesikari17
1Department of Microbiology, Immunology and Transplantation, Laboratory of Clinical and Epidemiological Virology, Rega Institute for Medical Research, Belgium, 2ZN Consulting, Belgium, 3Vaccine-Preventable Diseases and Immunization programme, WHO, Denmark, 4Standing Committee of European Doctors - CPME, Belgium, 5European Affairs, European Pharmaceutical Students' Association (EPSA), Belgium, 6Children Vaccination Centre under Children's Clinical University Hospital, Riga, Latvia, 7Paediatric Association of Serbia, Serbia, 8Faculty of Medicine and Specialization School for MDs in Hygiene and Preventive Medicine at the University of Florence, Italy, 9Paediatric Infectious Diseases at Imperial College London, United Kingdom, 10University of Oxford, Nuffield Department of Primary Care, Royal College of General Practitioners Research and Surveillance Centre, United Kingdom, 11Paediatrics and Molecular Infectious Diseases, Imperial College and St Mary's Hospital, UK Health Protection Agency Meningococcus Forum, United Kingdom, 12National Institute of Paediatrics Heim Pal, Hungary, 13University of Split, School of Medicine, Croatia, 147/11 - Vaccines Today, Ireland, 15Carol Davila University of Medicine Bucharest, Romania, 16National Centre of Infectious and Parasitic Diseases, Bulgaria, 17Vaccine Research Center, Finland
Since 2015 the Excellence in Pediatrics Institute (EIP) has worked with European and global partners to help overcome the many remaining barriers to vaccination uptake. By connecting and working with colleagues across Adolescent Medicine, General Practice, Pharmacy and Nursing, and uniting behind the EU Commission's Coalition on Vaccination, EIP's goal is to promote a LifeCourse approach to vaccines.
Most notably, EIP believes that the following barriers remain: 1) Policy discrepancies - Heterogeneous national vaccination policies. Differences in approach, prioritisation and decision making processes. 2) Overarching barriers - Lack of policies to increase vaccines confidence, counteract misinformation, increase awareness and mobilise medical communities, and 3) Failure to adopt a LifeCourse approach - Prevention Policies not adapted to demographic changes and an increasingly ageing population. Disease prevention in all stages of life is not yet a priority.
As part of EIP's work within the EU Coalition on Vaccination, 8 Stakeholder Working Groups, as well as a joint EU Commission and WHO plenary briefing, took place at 11th EIP Annual Conference in Copenhagen in December 2019. During the Working Groups, speakers were asked to share their opinions on ways to increase vaccination uptake in both the general public and healthcare professionals, on the current state and progress made in increasing vaccination coverage rates in different countries and to mention the obstacles faced in the process. Four of the Working Groups looked at vaccine-specific barriers, while the remaining four looked at policies focusing on overarching barriers.
One of the Policy Focus Groups was tasked with looking at misinformation, and specifically how we can better combat and counter online misinformation. During the Focus Group, several experts shared their thoughts on this crucial matter, mentioned the fundamental issues that led to vaccine misinformation, and proposed possible measures to fight the anti-vaccine movements and the misinformation they spread.
The following report summarises the invited experts' briefings, discussions, and proposed action plans that were debated during the proceedings of the Misinformation Policy Focus Group.
Working Group Briefing
Presenter: Prof. Marc Van Ranst, Professor, Department Chair of the Department of Microbiology, Immunology and Transplantation, Head of the Laboratory of Clinical and Epidemiological Virology, Rega Institute for Medical Research, BelgiumProf. Van Ranst was invited to open the Focus Group by highlighting and exploring the crucial need to provide evidence-based credible information in order to improve vaccine confidence in the general public.
Prof. Van Ranst commented that although we have successfully eradicated severe diseases such as smallpox and polio, people still hesitate when it comes to vaccines — one of the main reasons being that they have never witnessed the disease's impact on their lives. Anti-vaccination movements and vaccine hesitancy have now been identified by the World Health Organization (WHO) as one of the biggest threats to world health.
He provided the historic context that the first anti-vaccination movement started back in 1796 when Edward Jenner first began vaccinating, partly because the first physicians were using nothing evidence-based and vaccination could sometimes go wrong as the mixtures used were not pure. Although many years have passed, it seems we still need evidence-based information in order to overcome vaccination hesitancy.
Prof. Van Ranst proposed the introduction of vaccinology courses in all medical and paramedical education programs. In most universities, vaccinology does not stand alone as a course, but its principles are scattered through others such as microbiology and virology, and the outcome is that healthcare professionals do not ultimately feel comfortable with vaccination. As the Centre for Disease Control (CDC) has highlighted, vaccine hesitancy mainly comes from parents and people not feeling safe about vaccines. By reinforcing the education of doctors and nurses with extra vaccinology courses, we could end up with better-informed healthcare professionals who can be fully trusted by the public, thereby decreasing vaccine hesitancy.
Apart from healthcare professionals, Prof. Van Ranst underlined that we also need to educate the general public — by informing children in schools about viruses and bacteria, the evolution of disease, basic principles of immunity, and the heroes of vaccinology, using interesting and simple movies and presentations.
He then posed the question of what a healthcare professional should do if called to answer questions about vaccine hesitancy. Numerous legitimate internet sites such as WHO, PublicHealth.org and CDC can provide evidence-based answers and help HCPs address vaccine-hesitant people. However, he underlined that one should not waste time trying to convince a headstrong anti-vaccine person, as their arguments mainly come from personal stories where vaccination went wrong. He also suggested HCPs avoid participating in falsely balanced media debates, because the media care about the coverage and impact of the story rather than the true message and facts.
In conclusion, Prof. Van Ranst pointed out that we are not doing enough to tell the stories of the successes of vaccination, and that we should also highlight to the public the adverse outcomes of not vaccinating for potentially dangerous diseases.
Working Group Briefing
Presenter: Mr Philip Weiss, Founder and CEO, ZN Consulting, BelgiumMr Philip Weiss was invited to brief the Focus Group on the magnitude of power that social media holds nowadays, and to propose ways of confronting and effectively combating online misinformation.
Mr Weiss explained the correlation of social media and vaccines in the age of disinformation, giving the example of the Black Swan Theory — a very unpredictable event considered impossible by nature until it happens — and its connection with a more recent bird, Twitter, which represents social media in general, transforming the way we communicate and shaping perception and behaviour. He concluded that as information is power, and in this era the major source of information is the internet, then the internet is power, so social media that can shape perception can make people vaccinate if you provide the right information at the right time to the right people.
He noted that fear spreads fast, and that is what the anti-vax narrative exploits to thrive, especially in situations like a measles epidemic or the H1N1 crisis. The pro-vaccine community must embrace and confront this, not only by publishing facts, reports or statistics that people find hard to connect with, but also by spreading stories that apply to individuals — bringing the story in front of the parent and making it personal, because that is ultimately why you vaccinate.
Mr Weiss referred to a study by Renée DiResta on the anti-vax movement1, showing that the anti-vax network was much more interconnected and thus more efficient in spreading stories than pro-vax people, who are less agile and effective at connecting — a major problem in the medical community. Social media hesitancy (people being afraid or worried about social media) needs to be overcome on the pro-vax side of the battle. By ignoring social media, healthcare professionals allowed anti-vaxxers to dominate the space, yet this can easily change if HCPs — who are generally far more trusted on social media — communicate effectively to build a highly trusted network that amplifies the pro-vaccination message.
He gave examples of HCPs who have done this well, either by openly confronting anti-vaxxers or by amplifying pro-vaccination rhetoric, and explained that the most important thing is simply to start getting involved. As general guidelines: misinformation is not a joke and we must work together to stop it spreading — by rebutting or flagging damaging stories before they take hold, reporting accounts or posts spreading misinformation to the platform, and focusing on building respect and keeping the trust HCPs already have, rather than rebutting every false claim.
The briefing looked at the main social media players (Facebook, Twitter, YouTube, LinkedIn and Instagram) and their roles. Mr Weiss noted that in March 2019 the tech companies began responding to demands to crack down on vaccine misinformation, but we remain far from where we should be. On Twitter specifically, he advised that effective use involves carefully listening to what others say and then engaging with a five-step action:
This five-step action plan can amplify pro-vaccine messages and expand your network of influence.
On dealing with misinformation and attacks, Mr Weiss described two courses of action: monitoring only what applies to attacks from trolls and ragers, and using fixed facts or a restoration narrative for people who are misguided or unhappy from a personal experience. He then analysed his theory called "The Jiu Jitsu move," which applies when someone is attacked by an anti-vaccine individual with thousands of followers, and explained how this is a great chance — though it takes effort — to fight back and promote pro-vaccine rhetoric to numerous people, turning the tables. On the time required, he recommended prioritising, planning and committing 15-20 minutes daily (making it a habit), delegating, disseminating, learning and adapting.
In conclusion, Mr Weiss emphasised that we need to start fighting social media misinformation by joining the global conversation one tweet at a time, connecting with pro-vaccine influencers, amplifying and engaging to shift the conversation, and finally learning by doing and sharing the experience with your network.
It was commented that being in a regulatory environment often limits the freedom to express views on social media and the speed of response, since one must ensure compliance with organisational rules. Mr Weiss made two points: there are clear things from professional sources that can be tweeted and re-tweeted without issue as a good starting point, and people should be a little more relaxed with social media, recognising the importance of swift engagement rather than waiting months, because by then the damage is done and lives are at risk.
Dr Jacques de Haller commented that to avoid this problem and keep doctors' credibility, the Standing Committee of European Doctors (CPME) has decided to elaborate policy papers and adopt them in a general assembly. Mr Weiss replied that turning policy papers into key messages usable as approved narratives is a good start, further supported by adding common sense, sharing articles you agree with, or posting them with "Opinions are my own" — something now accepted by most organisations.
Dr Habersaat added perspectives on online misinformation and vaccination. She noted that, looking at the data, there is no evidence that the increase in available online information or the use of social media has actually led to a decline in vaccination, with average vaccination coverage higher than the last two years. One of the main reasons we did not see the dreaded impact many feared is very skilled healthcare professionals who are able to respond to parental concerns and questions effectively.
She emphasised that both parents and patients have very high expectations of HCPs, making them a key factor in decisions such as vaccination uptake but also placing a lot of pressure on them. The correct way forward is providing training and skills-building among healthcare workers, from medical school and throughout their careers — training focused not just on vaccinology but also on inter-personal communication, to understand the psychological factors relating to parental fears and concerns. HCPs need to act according to each case: accepting parents need one approach, hesitant parents another, and refusing parents yet another, and medical workers have not been trained to consider this. She added that it is important to understand both what we can and cannot do, especially in building trust and resilience to vaccine safety scares, as there is little strong evidence that you can change how people feel once they hold a certain perception. She concluded that early vaccination is preferable (10-12 years old), as at that age individuals can understand some complexity but are not old enough to have an established position.
Dr Mosina pointed out the importance of teaching medical workers how to communicate with parents about vaccination — having both deep knowledge to answer questions and the communication skills to shift parents towards the decision to vaccinate their child. She noted the medical doctor providing the information must be confident in vaccines, and unfortunately there are still HCPs who are hesitant and do not feel comfortable recommending vaccination.
She noted that although it is crucial to include vaccination training in medical education, most replies from universities imply the curriculum is already very packed and adding a week-long vaccination course would not be easy. She underlined the need for continuous education so doctors can get updated information about new vaccines and safety and always feel comfortable about vaccination. She then questioned the importance of social media, given that parents' trust still lies in doctors, posing the dilemma of where to put our time and energy — fighting anti-vaxxers on Twitter or talking to parents — adding that medical societies should be responsible for addressing this.
Dr de Haller commented that the projects of European doctors are in line with the guidelines from previous presentations, adding that they now work in a coalition with other health professionals on social media and communication activities to positively influence what is communicated to the general population. He mentioned a possible joint action for vaccination by the European Commission, currently conducting a study on social media and particularly Twitter: preliminary results, after analysing 12,000 tweets, show that among a variety of groups, the anti-vax group is much smaller than the pro-vax group but much more active.
He asked what the point is of trying to change the minds of committed anti-vax people who most probably won't change. Mr Philip Weiss answered that it is always better to try something than nothing, such as spreading positive vaccine stories, and that there is a large group of people who may be sceptical but are not hardcore anti-vaxxers and can be influenced towards the right direction. In conclusion, Dr de Haller referred again to the ongoing vaccination coalition, noting they have chosen to address HCPs more than the general public, arming them with resources and means for their own fight for vaccination. An audience comment underlined that many HCPs feel it is often a waste of time to convince individuals with extreme vaccination ideology, and that one should aim for the vast majority of average individuals who can be shifted towards a pro-vax attitude. Mr Gary Finnegan (Vaccines Today) noted that using social media for vaccination not only spreads positive messages but also influences Google rankings, helping pro-vax information climb the search results.
Dr Kozole described what EPSA is working on to combat vaccine misinformation. Their strategy consists of carrying out public health campaigns and delivering webinars for pharmacy vaccination, referred to as the Think Young Coalition — gathering young people who believe in, trust and support vaccines, launching their manifesto on 21 January 2020 in the European Parliament.
He commented on the Global Vaccination Summit held in September, organised by the EU Commission and WHO, which also focused on misinformation and mistrust, and pointed to speaker Ethan Lindenberger, an 18-year-old American raised by anti-vax parents who got vaccinated against his mother's will once he reached maturity — a strong personalised voice for vaccination, as Greta Thunberg has been for climate change. He emphasised the need for alternative ways of promoting vaccination, such as giving bracelets to vaccinated children who show them off at school, prompting non-vaccinated children to press their parents. He underlined the importance of the voice of youth, since this generation are considered experts in social media, and the importance of communication and understanding, as pro-science data is often hard to comprehend and needs to be passed across easily either through social media or face-to-face conversation.
Dr Zavadska reported the problems Latvia faces regarding the anti-vaccine movement and the steps taken to fight it. One main obstacle is a lack of government support for vaccinating children and pregnant women, as anti-vaccine people hold central roles in Parliament. Nonetheless, they have provided information on hospital web pages with eye-catching titles to attract the public. Her main message was that unfortunately nobody believes in the impact of influenza on people's health, and that we need to change that.
On influenza, they produced pictures showing the outcomes for infected and unvaccinated people, which reached some people, made YouTube videos promoting "Stop Children Dying from Vaccine-Preventable Diseases," and gave many TV and radio interviews. However, they did not confront or try to convince anti-vaccine people on Facebook, as they were sure they could not be convinced.
Prof. Bogdanovic described the problems of vaccine misinformation in Serbia and the steps being taken. Like the rest of the world, the main source comes from organised anti-vax groups or individuals spreading their ideas through social networks, electronic or printed media, public meetings or TV debates — intensifying over the last decade, with the internet the main cause of misinformation and inadequate public awareness. He emphasised the unfortunate fact that among the anti-vaxxers are two professors of paediatrics, causing enormous damage to vaccination advocacy.
He underlined that the MMR vaccine was specifically targeted by anti-vaxxers in Serbia, and coverage dropped at national level to 85% from over 90% over four years — reaching 35% in one of the largest cities, leading to a measles outbreak two years ago affecting almost six thousand people with 15 deaths. Fortunately, due to the epidemic and several activities by government agencies and professional organisations, MMR coverage reached 93% overall last year. He referred to drastic measures taken, including a group of doctors and citizens filing criminal charges against multiple anti-vaxxers, and the Medical Chamber launching a procedure to revoke the licenses of doctors who are the most prominent public opponents of vaccination.
Focus Group members shared their views on the role of public authorities, organisations and associations in countering vaccine misinformation. In Italy, a website dedicated to promoting vaccination and its benefits was created, and a group formed in alliance with scientific societies to promote vaccination and intervene during a vaccination crisis, supported by government financing.
Another member suggested vaccination should be part of national security policy, with a movement to counteract internet misinformation. Also discussed were the need to provide clear and simple definitions regarding vaccination, and clear, systematic methods for countering misinformation, with a medical "hero" promoting the benefits of vaccination as a further aid. The example of Hungary was cited, where an immunization calendar accessible via website provides up-to-date information on vaccination policies, alongside a special course for medical students examining 20 case scenarios on vaccinations and their possible adverse events.
Experts commented on ways of mobilising healthcare professionals to engage on social media. It was noted that for parents to recognise the value of medical and professional information, one should provide clear, meaningful and evidence-based information. Research is currently taking place on collecting and providing data from around the world on different disciplines and approaches to fighting misinformation. It was concluded that the media are a powerful tool in fighting misinformation, if used properly.
Possible measures were suggested to counter the disproportionate number of websites that look scientifically credible but are in fact anti-vax led. One was the development of training material for medical doctors to re-train those mistrained during their medical education who adopted the wrong attitude towards vaccination. Another was to simply ignore anti-vaccine people and focus on providing evidence-based information. Finally, it was proposed to create websites dedicated to clarifying whether information provided by another website is accurate or wrong.
The Policy Focus Group was dedicated to looking at ways we can better combat online misinformation. The Group concluded that there is currently a lack of appropriate training on vaccines for healthcare professionals, medical students and the general public. It underlined a need for better and more effective communication towards patients. On social media, there is an urgent need to train healthcare professionals to use it more effectively and to mobilise them to spread positive messages online. Finally, we should provide additional, easy and accessible information regarding the benefits of vaccinating.
In addition to the concluding points above, the following areas were raised that need to be explored in more detail with necessary actions taken in 2020-21 to achieve improved vaccination coverage, they include:
HCPs are, in general, currently social media hesitant — often afraid or worried about social media — and this needs to be overcome on the pro-vax side of the battle. Anti-vaxxers dominate the space, yet this can easily change if HCPs, who are generally far more trusted on social media, communicate effectively to build a highly trusted network that amplifies the pro-vaccination message.
A series of free-to-view webinars covering: 1) how social platforms work in disseminating information; 2) the dos and don'ts of working with social media; 3) how to react when facing a misinformation issue; 4) best-practice approaches to disinformation; 5) how to link social platforms with an additional trusted source of information; and 6) the power of creating YouTube videos for direct and customised impact against disinformation.
The most damaging misinformation on vaccines often comes from people with medical credentials spreading unfounded fears. There is an urgent need to put measures in place to counter the disproportionate number of websites that look scientifically credible but are in fact anti-vax led. We must better formulate our content and cooperate with the media — becoming more active, uploading content, and establishing points of information to counteract the disproportionate number of misinformation websites peddled by anti-vax activists.
Launching a campaign to adopt a common message to parents across the medical community to strengthen the message. Looking to create websites dedicated to clarifying whether information provided by another website is accurate or wrong.
To provide continuous education to medical doctors, with classes offering updated information about new vaccines and safety so they can always feel comfortable about vaccination. There is a need to develop training material for medical doctors that can be used to re-train and update those who have adopted the wrong attitudes towards vaccination.
1) A Policy Focus Group dedicated to facilitating the introduction of vaccinology courses in all medical and paramedical education programs, including a special course for medical students examining 20 case scenarios on vaccinations and the possible adverse events of not vaccinating. 2) The development of free-to-view online training and material for HCPs, accessible throughout their careers, to counter vaccine hesitancy — targeting those who have adopted established, outdated attitudes towards various vaccines and vaccination in general.
