A worldwide debate on human papillomavirus (HPV) vaccination started in 2013. Unexplained symptoms among girls made parents question the safety of the vaccine. This kickstarted a media storm in both traditional media and the growing social media. Researchers analysed the Facebook debate and found that feelings such as loss, doubt and betrayal were the driving force in an escalating debate. The study provides a more nuanced sense of the factors that can accelerate the population’s scepticism towards vaccines or new technology.
Public health authorities are increasingly concerned about misinformation about vaccines on social media platforms, since one factor determining the effectiveness of a vaccine is the proportion of the population that gets vaccinated. In 2013–2017, a debate erupted on HPV vaccination to protect girls from infection with HPV and thereby cervical cancer later in life. The proportion vaccinated declined in that period from 90% to just over 50% of an age cohort. Researchers investigated the aspects of the debate that kept the HPV pot boiling on social media.
“Our study of Facebook pages with groups critical of the HPV vaccine shows that misinformation is not the only driver of the debate. The groups often share personal stories of loss, doubt and betrayal. This demonstrates the risks associated with thinking that HPV vaccine sceptics can be countered simply through additional information or by viewing the sceptics as a uniform group of conspiracy theorists. Instead, listening and talking to the many different groups of doubters is important,” explains a researcher behind the study, Kristian Hvidtfelt Nielsen, Associate Professor and Head of the Centre for Science Studies at Aarhus University.
Debate suddenly escalated
HPV is transmitted through sexual contact, and infection with subtypes HPV-16 and HPV-18 significantly increases the risk of cervical cancer. Research shows that 70% of cases of cervical cancer can be prevented by vaccinating girls at 12 years. Denmark’s parliament unanimously approved introducing the vaccine for girls free of user charges in 2009, and up to 90% of parents accepted the offer until negative media coverage in 2013 suddenly changed everything.
“It started with a short newspaper article about possible conflicts of interest among some general practitioners who received support from the pharmaceutical company involved in manufacturing and marketing the vaccine. A few weeks later, the same journalist wrote about a girl who became seriously ill after receiving the second dose of the HPV vaccine,” says Kristian Hvidtfelt Nielsen.
The journalist used Facebook to search for other girls with suspected side-effects, and that request circulated quickly on social media in Denmark. Soon several similar stories appeared in national and local media with interviews with girls, their families and a few healthcare professionals. The debate soon escalated on social media, and the new study is based on this debate.
“To analyse the debate properly, we examined Facebook pages that only focused on the HPV vaccine and only those that were critical of the vaccine,” explains Kristian Hvidtfelt Nielsen, adding, “That narrowed it down to three Facebook groups, which we then systematically analysed for content and especially the type of debate.”
Explosion on social media
The three Facebook groups were: A: HPV Vaccine Info – Fighting for Fair Information about the HPV Vaccine; B: HPV Update; and C: National Organization for Those Afflicted by HPV Adverse Events. Despite having a common focus, the three groups had vastly different types of content and especially vastly different ways of communicating it. Group A included an unknown number of “passionate writers”, and the other two sites were set up to support the families of girls whose symptoms were suspected to have been caused by the HPV vaccine.
“The administrators of these three groups approached the topic very differently. Group A became more introverted, referring primarily to its own contributions. Group B questioned the scientific basis of the vaccines by focusing on the fact that epidemiological studies do not relate to the actual lives of individual people. Group C focused very narrowly on girls and their families who felt betrayed by politicians, the media and Denmark’s healthcare system,” says Kristian Hvidtfelt Nielsen.
The study also shows that social media only gained serious traction in autumn 2015. Group C in particular exploded with almost 120 posts per month. This is undoubtedly due to the national public-service broadcaster TV2 screening the documentary Vaccinated Girls – Sick and Betrayed. The documentary featured 47 girls with headaches, cramps and extreme fatigue who reported that the symptoms first appeared or significantly worsened following HPV vaccination.
“Almost 10% of Denmark’s population watched the broadcast, and it was much discussed in the news and on social media. It was followed by a marked decrease in the HPV vaccination rate and a sharp increase in the frequency of reported suspected side-effects,” explains Kristian Hvidtfelt Nielsen.
From nomination for the Cavling Prize to robust criticism
The European Medicines Agency stated that the evidence did not support the HPV vaccines causing the side-effects described, but this scarcely helped. The most remarkable thing about the researchers’ new study is therefore possibly that misinformation is typically not what drives or fills social media.
“Some of the posts on the pages deal with doubts, since many questioned whether the doctors or the Danish Cancer Society were bought off by the pharmaceutical industry. The real fuel, however, was the personal stories about the loss of the girls’ childhood and the feelings of betrayal by a healthcare system that appeared unable to explain the girls’ symptoms. And this may explain why the public health authorities’ assurance that the vaccine did not cause the symptoms did not have the desired effect. The families did not get the answers they were looking for, “says Kristian Hvidtfelt Nielsen.
When Denmark’s public health authorities finally engaged with the social media in 2017 with their Stop HPV campaign, something very interesting happened with media coverage. Journalists and editors then accused TV2, which had otherwise been nominated for a Cavling Prize (a prestigious journalism prize in Denmark) for their coverage, for excessive emotional journalism and for not reporting the facts about HPV vaccine and also the content and activities of the three Facebook pages.
“The debate on the group B page shifted noticeably from being one-sided to both for and against. Further, activity significantly declined on all three pages and died out almost completely on group A,” explains Kristian Hvidtfelt Nielsen.
More statistics is often not enough
Commentators from the academic world and the public health authorities began to see the HPV controversy in the light of misinformation and specifically targeted the spreading of misinformation on social media as the cause of the problem. However, the new study provides a somewhat more nuanced picture of the causes.
“What really counts on social media is gaining recognition and getting fair treatment. These parents were supporting daughters with really severe symptoms, and they may have simply wanted a hearing and a possible explanation. They were not looking for scientific facts about HPV vaccination. This information may have done more harm than good because it made parents feel that the system was not recognizing their frustration and suffering,” says Kristian Hvidtfelt Nielsen.
By 2018, the HPV vaccination rates were back to the levels before the debate, and the girls who were not vaccinated when the debate about the HPV vaccine peaked were successfully identified. The reports of side-effects have also plummeted. The Stop HPV message includes that you cannot always find an explanation for why you are ill.
“Even though that message does not make the girls healthy, it takes the parents’ concerns seriously. And that is also what we learned from our study: what not to do. Evidence and information are important, but not communicating one-sidedly is still important, because sceptics are not all the same and must therefore be treated differently. Some need facts; others need recognition, understanding or treatment, and then just providing more statistics is pointless,” concludes Kristian Hvidtfelt Nielsen.