Body Politics
The old and new public health risks of networked health misinformation
At a castle in Leicester, England, a group of nearly 100,000 protesters physically gathered to rally against the recently-instated Vaccination Act. The year was 1885. A new body of scientific evidence on the efficacy of vaccines had led to a political mandate for vaccination, and clusters of the general public reacted by mottling this scientific discovery with misinformation about vaccine-related death and disease. The crowd that gathered at the castle carried banners that exclaimed the injustices of required vaccination: “Compulsory vaccination is a usurpation of unjust power” and “Truth conquers.”
By the beginning of the 20th century, this anti-vaccination sentiment had spread overseas to the United States in the form of pamphlets, court battles, and heated legislative debate. Amidst this political struggle, early Supreme Court rulings managed to uphold vaccination mandates and subsequently quell the growing swell of anti-vaccination rhetoric until the latter half of the century.
Without historical context, health misinformation risks being mistaken for a phenomenon of the internet’s unique participatory nature.
Today, the World Health Organization (WHO) has named anti-vaccination beliefs (or “vaccine hesitancy”) as one of ten global health threats in 2019. The WHO is among many medical and public health organizations warning that the current circulation of viral health misinformation may very well undermine a century’s work of building public trust in medical institutions—not only in vaccination but in countless examples such as cancer, eating disorders, and ebola.
Without historical context, health misinformation risks being mistaken for a phenomenon of the internet’s unique participatory nature. Anti-vaccination sentiments have been around for nearly as long as widespread vaccination itself, yet there are material differences between the thousands of protesters that once gathered outside of a castle in England and the tangle of siloed communities that churn out torrents of anti-vaccination rhetoric online. Much like the contemporary online mis– and disinformation aimed at undermining democratic infrastructures around the globe, the gaming of information systems to spread mass health falsehoods threatens both our social institutions and our personal well-being.
In the U.S.’s modern medical paradigm, power is shifting from the medical professional to the patient, making the subversion of medical expertise particularly effective. Self-empowered patients are increasingly reliant on information systems, especially social media and search engines, to make health-related decisions for themselves and their families. Social influences are a primary factor in the adoption of health behaviors, both on– and offline; individuals have long looked to their peers as primary sources of health information.
More recently, social media have become indelible parts of the public health landscape as online social networks have made health communities and information more accessible. Similar to the effects of offline social influence on health decisions, social media has been found to significantly influence the collective dynamics of individual health behavior. Research has even found that 80% of self-diagnoses start from “Dr.Google.” These systems that generate, organize, and spread health information continuously shape our perceptions of health risks, and as a result, have exposed new vulnerabilities for networked health information.
Bots, search engine optimization, and the gaming of recommendation systems are foundational tools used by various actors to influence public health discourse.
Health is inherently political, as shown by the protest signs decrying overbearing government oversight at the 1885 anti-vaccination protests. This compounds vulnerabilities associated with internet-reliant patients. The contentious nature of health information, much like other divisive topics, makes the upswell of health misinformation online particularly susceptible to be leveraged for disinformation efforts.
There are clear parallels between the tactics used to spread health disinformation and political content. For instance, in 2018, researchers found that large networks of bots and trolls were spreading anti-vaccination rhetoric to sow confusion online and amplify the appearance of an anti-vaccination community. The anti-vaccination tweets often referenced conspiracy theories, and some accounts almost singularly focused on the U.S. government. As a result, real-life users and orchestrated networks of bots are engaged in a feedback loop. Recently, political public figures have used their platform to amplify vaccination misinformation, such as tweeting that measles can help fight cancer. There is a long history of people using influence to sway public opinion about vaccines—particularly among celebrities.
These are symptoms of a larger societal crisis: disinformation campaigns aimed to undermine social institutions.
The search and recommendation algorithms that underpin our information retrieval systems are other modern tools mediating access to health information. When a user enters an inquiry into a search engine, they receive curated results. As so many people rely on search engines for health information, they are another important mechanism that is susceptible to manipulation. For instance, the websites of some crisis pregnancy centers—which are designed to look and sound like those of clinics that provide abortion care, but instead give misleading information about the negative effects of abortion to visitors—are optimized results for Google searches often made by women seeking abortion information.
Similarly, recommendation systems on popular social media platforms, particularly Facebook and YouTube, create easy entry points for problematic content. For example, a mother joining a generic parenting group on Facebook may subsequently receive recommendations for anti-vaxx groups. Bots, search engine optimization, and gaming of recommendation systems are foundational tools used by various actors to influence public health discourse and skew public debates — often blurring the line between medical mistrust and larger political ideologies and agendas.
Ultimately, is the end-game for actors orchestrating health disinformation to trigger pockets of measles outbreaks, mislead parents about their child’s autism, or steer a woman away from getting an abortion? No. These are symptoms of a larger societal crisis: disinformation campaigns aimed to undermine social institutions. Modern health disinformation capitalizes on the already contentious nature of health. It targets not only those keen on conspiracy theories, but also sincere consumers of healthcare who are navigating a complex system of personal beliefs, temptations of alternative “cures,” and rumored negative effects of vaccination.
Modern health information is a complex web of powerful digital tools that move beyond the public health threats posed by banners and pamphlets that protestors distributed in 1885. These are threats that platforms like Pinterest and Amazon, combined with primary care physicians, now have to address. Anti-vaccination rhetoric is a familiar form of public debate over personal freedom and the larger public good, but the new iteration is inciting more than angry mobs around a castle in England. Our networked health information has fallen into an intricate, and often deceiving, dance between health, skepticism of evidence-based science, and contentious politics.
Information continues to be a fundamental component of public health, and as political actors leverage health disinformation to wage digital warfare, it’s our wellbeing, and potentially our lives, caught in the crossfire.
Erin McAweeny is a research analyst with the Health and Data Initiative at Data & Society.
