When it comes to providing accurate medical information, social media is a hot mess. Reporting by the Guardian and elsewhere over the last few months has revealed many troubling examples: the top searches for vaccines on Amazon turn up anti-vaxx books instead; YouTube purposely keeps viewers on its website by suggesting increasingly conspiratorial content; Facebook is a safe haven for propagandists and helps anti-vaxx profiteers make money.
The result? We are experiencing rising outbreaks of eliminated diseases like measles, and the World Health Organization has named vaccine hesitancy one of the top threats to global health in 2019.
At the center of this storm are online “echo chambers” which suck in concerned parents behind walled gardens rife with anti-vaxx material. Many of these echo chambers – pages and online groups like “Vaccine Resistance Movement”, “Vaccine Re-education Discussion Forum”, and “Vaccine Injury Stories”, for example – have hundreds of thousands of followers. Where do they come from? Much of the blame can be placed on profiteers: those who seek to exploit the ignorance and fears of parents and others for financial gain.
Take Andrew Wakefield, for example, whose medical license was revoked for false claims linking the MMR vaccine and autism, yet continues to profit through his propagandistic film Vaxxed, which has made almost $1.2m at the box office. Or consider Larry Cook, who runs a group called Stop Mandatory Vaccination. He has raked in almost $80,000 from anti-vaccination GoFundMe campaigns, which he freely admits go “directly” to his bank account and “may be used to pay [his] personal bills”.
Profiteers are responsible for gatekeeping many of the staunch anti-vaccine communities found on social media, where anyone who expresses an opinion contrary to theirs is attacked and banned from the group in order to keep the echo chamber as tight as possible. It is through these echo chambers that profiteers continue making money; they sell their own books and alternative lifestyles and bankroll themselves from GoFundMe campaigns. Any dissenting voice is a threat to their finances, so they encourage intense groupthink and mob mentality.
Vaccine misinformation is a profitable online business with fatal consequences. But it is not inevitable. We can fix it.
What can we do as advocates? Well, here’s some advice you might not want to hear: we have to do a lot better a job at talking to fence sitters. Yeah, we know. It’s a frustrating experience. It’s so much easier to be snarky, or to immediately shut detractors down. But most anti-vaxxers do not start out as outright science deniers. They become more polarized and fall into the trap of profiteers when they seek confirmation from echo chambers after their fears are dismissed and ridiculed.
Most people who choose not to vaccinate are not making their decisions out of malice but because of a lack of scientific literacy and falling for emotional traps. Many have fallen victim to the false information propagated by profiteers and the like, who capitalize on scare tactics. We, as pro-vaccine advocates, can hold some responsibility in preventing the echo chambers from filling up by following evidence-based advice, keeping our discussions with vaccine skeptics civil, and by not dismissing them all as “quacks”. For too long public health advocates have conceded crucial ground to anti-vaxxers, who have become much more adept at cultivating online communities. It’s time to change that and meet people where they’re at.
However, all of our hard work as advocates is undercut unless technology companies themselves change too. These companies can shut down echo chambers and stop profiteers by being more proactive. In reaction to public pressure, YouTube and Facebook have stated that they are tweaking their algorithms (again) to deprioritize posts that spread misinformation, but this isn’t enough. There are stronger steps they could take.
One option is to completely ban anti-vaxx groups, which would help limit the spread of dangerous misinformation. Pinterest is taking a similar approach by banning searches. On the surface, this may seem like the best solution. However, it’s possible that banning these groups outright may produce unintended consequences. For example, these groups are currently relatively easy to observe and track, but they may go underground, where they will be much harder to follow; members are already talking about moving their platforms to alternative sites like MeWe, or they may rename groups so that they do not appear to have anything to do with vaccines.
Another option in the case of Facebook is to open private vaccine groups up to the public so that anyone can join them without the threat of being banned. By preventing moderators from banning those who threaten their agendas, vaccine advocates could flood the echo chambers to counter the propaganda.
Ultimately, these reactive measures and good intentions alone may not be enough to truly eliminate all the damaging misinformation floating on the internet. The fundamental issue isn’t just how our social media platforms are moderated, it’s how tech companies make money. These platforms use algorithms that keep us glued to their sites as long as possible so they can serve us ads. This has a dark consequence: their proprietary code has deciphered that the best way to make our attention stick is by suggesting increasingly extremist and conspiratorial content to us. Social media has been weaponized to serve ads.
This means that to create lasting change, our work as advocates is twofold: to be more present and compassionate in our communities, and to hold technology companies accountable. We need to push for a radical shift in the business practices of tech companies, away from ads and back towards people. Offering minor fixes after harm has already been done is not enough. It is not OK to sit there and profit while society pays the catastrophic cost of unfettered hate speech, erosion of democracy, and public health crises. A better social media industry is possible and essential; one that serves human values, rather than exploit human vulnerabilities.
Lucky Tran is a science communicator at Columbia University, holds a PhD in biology from the University of Cambridge, and is a board member of the March for Science. Rachel Alter and Tonay Flattum-Riemers are recent graduates from the Mailman School of Public Health at Columbia University. Both are science communicators who focus on vaccine education and manage the vaccine-related content of the March for Science social media pages.