It’s a Jungle Out There: Navigating Vaccine Advice in the News and on the World Wide Web
The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.
—Daniel J. Boorstin
As discussed briefly in chapter 2, Genesis of the Anti-vaccine Movement, the primary difference between the anti-vaccine movement of old and that seen today is the advent of the World Wide Web. For better or for worse, information now travels with lightning speed and anyone with a will and a bit of tech savvy can set up shop on the Internet and dispense information. Data are a few keystrokes away, and the scientific studies and health research that were previously largely the purview of doctors and scientists are now available to all. For the most part, this is a good thing. We want patients to be knowledgeable about their health. However, for those without the training to differentiate good information from bad, or likely conditions from unlikely, the information encountered on the Web can be confusing and scary.
Medical practitioners have a love-hate relationship with Dr. Google, as we affectionately call our Internet search engine colleague. When it comes to very rare conditions, having patients now be able to research their symptoms and contribute to the diagnostic process can be advantageous. Many of us have had encounters with patients who have diagnosed themselves accurately even before setting foot in our offices. Access to a wealth of health information and to technology that allows people to track health data facilitates patient engagement, and patients have become more active participants in their health as a result. However, more often than not, we see the downside of Internet searches. We see patients who are overwhelmed and made anxious by the information they have encountered online.
This chapter will delve into the role that the Internet and news and social media play in the vaccine discussion. It will highlight what our patients are encountering in their foray into web-based health advice, with particular attention paid to the individuals and sites that make up the online anti-vaccine community. It will discuss the tactics used by those individuals and sites to instill doubt into the minds of unsuspecting patients and parents, who are just trying to get more information to make informed health decisions. Finally, the chapter will offer ways in which you can help guide your patients in interpreting information they find online, to determine whether or not it is worth their trust and confidence.
THE ROLE OF MEDIA IN THE VACCINE DISCUSSION
Many would argue that the media have been complicit in perpetuating the concern over the safety of vaccines. Both traditional news media outlets, such as CNN and CNBC, and more popular media programs, such as The Oprah Winfrey Show and The Dr. Oz Show have given voice over the years to anti-vaccine activists and conspiracy theorists, such as Jenny McCarthy and Robert F. Kennedy Jr. (Box 13.1). We have seen nationally broadcast “documentaries,” such as Lea Thompson’s 1982 Vaccine Roulette and PBS Frontline’s 2015 The Vaccine War, fan the flames of fear and confusion about the safety and efficacy of vaccines. This type of media coverage suggests to the public that there is a “debate” about vaccine safety. Though there may be discussion about vaccines, there is no “debate.” Vaccines have been proven safe and effective time and again and have saved the lives of millions of people.
Box 13.1 Did You Know?
The anti-vaccine movement is organized, well-funded, and is making its way into a political arena near you. Andrew Wakefield and others are throwing their weight behind political action committees that support anti-vaccine, anti-science candidates. Texans for Vaccine Choice, whose mission is to help elect anti-vaccine politicians, is one such group that Wakefield supports.1 The anti-vaccine movement is also active in deploying their most noted spokespersons to testify at House and Senate hearings in various states seeking to limit philosophical and religious exemptions to vaccines. These “experts,” such as Robert F. Kennedy, Jr. and Del Bigtree, like to tout their support for “choice,” “medical freedom,” and “parental rights,” appealing to those independent-minded people who want to keep “government” out of their health care. Yet, one-off health decisions do not a successful public health program make. Should we be concerned? Yes. The pro-vaccine, pro-science community needs to become as vocal and politically active as our anti-vaccine, anti-science counterparts, or we can expect them to gain the ear of even greater numbers of political representatives in the future.
In her article for Forbes, analyzing the Frontline documentary The Vaccine War, Tara Haelle describes the problem with giving equal airtime to the anti-vaccine movement in the name of “balanced reporting.” She states, “False balance is presenting ‘both sides’ of an issue in a way that makes it appear as though both are weighted equally, when, in fact, one side carries the heft of all the scientific research behind it and the other carries only anecdotes and cherry-picked, non-replicated studies and case studies in lousy medical journals. I’m certainly not the only one who has pointed out the negative impact of false balance in vaccine reporting. A feature in Columbia Journalism Review by Curtis Brainard in mid-2013 placed substantial responsibility for vaccine fears squarely on the shoulders of an irresponsible press.”2
Having faulty or misleading information heavily covered in the news, and then having this information retracted, also leads to a lessening in the public’s confidence in news outlets. If the major news outlets, whom we trust to do thorough investigative
journalism and to present us with facts and the truth, cannot be trusted to provide accurate information, then where do we turn to get our news? This issue is increasingly seen when it comes to political discussions; when news organizations such as Fox are so blatantly right-leaning and stories are spun to put the best light on a situation, but not necessarily to reflect the facts of the story; when MSNBC, which some would argue goes too far in the other direction, parades their eternal panels of liberal commentators across the screen; when there is no “news,” when there is only hype; when we can no longer trust the “experts,” it puts all of us who are experts in our field in an unfavorable light. Perhaps we, too, are as easily swayed or influenced as others. When it comes to news reports about vaccines and vaccine-preventable disease, we must demand accountability to the facts and not sensationalism. The health of our people depends on it.
journalism and to present us with facts and the truth, cannot be trusted to provide accurate information, then where do we turn to get our news? This issue is increasingly seen when it comes to political discussions; when news organizations such as Fox are so blatantly right-leaning and stories are spun to put the best light on a situation, but not necessarily to reflect the facts of the story; when MSNBC, which some would argue goes too far in the other direction, parades their eternal panels of liberal commentators across the screen; when there is no “news,” when there is only hype; when we can no longer trust the “experts,” it puts all of us who are experts in our field in an unfavorable light. Perhaps we, too, are as easily swayed or influenced as others. When it comes to news reports about vaccines and vaccine-preventable disease, we must demand accountability to the facts and not sensationalism. The health of our people depends on it.
INTERNET AND SOCIAL MEDIA IMPACT ON THE VACCINE DISCUSSION
A 2011 study looking at the use of Twitter to track disease activity during the H1N1 influenza pandemic noted that “an estimated 113 million people in the United States use the Internet to find health-related information with up to 8 million people searching for health-related information on a typical day.”3 Another study, published by the Journal of Medical Internet Research in 2016, looked at the number of tweets between February 1 and March 9 of 2015 (in the setting of a measles outbreak) using the word “vaccination” and its common derivatives (for example, “vaccines” and “vax”). In that short timeframe, 669,136 vaccine-related tweets were identified from around the globe. Vaccines and vaccine-preventable disease are most certainly being discussed on social media.4
Researchers in that same study also found that residents of Oregon and Vermont, the two states with the highest rates of nonmedical exemptions to school-entry vaccination nationwide, had the greatest social media engagement on the topic and contributed the most to vaccine discussions on Twitter. Furthermore, results demonstrated a greater impact of vaccine-related stories contributed by news organizations compared with those of tweets by health organizations in communicating health-related information. This suggests that people with the medical and scientific backgrounds to be discussing these issues are not the ones contributing the most to the conversation.4 The anti-vaccine movement on the Internet and social media is vocal, and false or misleading information is easy to find. Consequently, it is vital that the online presence of physicians, other medical professionals, and scientists, as purveyors of truth and reason, grows and expands. See chapter 15: A Call to Action, for further discussion.
Search engine optimization (SEO) is defined by the Oxford English Dictionary as “the process of maximizing the number of visitors to a particular website by ensuring that the site appears high on the list of results returned by a search engine.”5 There are multiple ways to maximize SEO that this author does not claim to fully understand, but anti-vaccination activists seem to be experts at use of this tactic to drive traffic to their websites. A study analyzing YouTube videos discussing immunizations found that 32% opposed vaccination and that anti-vaccine videos had more reviews and higher ratings than pro-vaccine videos. Researchers examining Canadian Internet users and their sharing of influenza vaccine information on networks, such as Twitter, Facebook, YouTube, and Digg found that 60% promoted anti-vaccine sentiment.6 Another study examined the top 10 results found on seven leading search engines, using the search terms “vaccination” and “immunization” and found that 43% of the top search results
were anti-vaccine, including all top 10 on Google.7 Patients’ use of the Internet to find health information is not going away. The pro-vaccine camp has got to get better at marketing itself and using techniques, such as SEO, to our advantage to ensure that factual information is rising to the top of Internet searches. The good news is that it seems we are making some positive strides in this direction.
were anti-vaccine, including all top 10 on Google.7 Patients’ use of the Internet to find health information is not going away. The pro-vaccine camp has got to get better at marketing itself and using techniques, such as SEO, to our advantage to ensure that factual information is rising to the top of Internet searches. The good news is that it seems we are making some positive strides in this direction.
In the process of writing this book, which has been in production (either in the research or writing phase for the last several years), I have noticed a shift. Lately, when typing in search terms aimed at looking into anti-vaccine claims, the sites that rise to the top of the search tend to be sites providing factual information, debunking the myths that are propagated so easily by anti-vaccine websites. Sites such as the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), Immunize. org, and others are now at the top of this list. One of the most active anti-vaccine sites, the National Vaccine Information Center (NVIC), which should more accurately be called the National Vaccination Misinformation Center, acknowledges this trend in its December 2018 post titled “The new Internet police protecting you from freedom of thought and speech.” They liken the “policing” of fake news and misinformation to an “electronic burning of books.”8 However, if the information being put forward on their site as truth and fact is indeed truthful and factual, then they should have no worries that attempts to rank sites based on these criteria will decrease their searchability. The move by search engines and social media giants to hold those with an online presence accountable to the truth and to responsible reporting gives me hope that, going forward, our patients will less often be bombarded with false and manipulative information that leads them away from making good health choices.
THE ECHO CHAMBER
Another byproduct of social media marketing and advertising, in feeding us what we want to see or learn about, is the creation of what is commonly referred to as an “echo chamber.” Many of us have undoubtedly seen this at work when it comes to the marketing of products. For example, if my 15-year-old son searches for new basketball shoes on my home computer, my Facebook feed is suddenly inundated with adds from Nike and Adidas. However, the same can happen in the marketing of ideas. In this regard, the term echo chamber refers to a situation in which “certain ideas, beliefs or data points are reinforced through repetition of a closed system that does not allow for the free movement of alternative or competing ideas or concepts.”9 Social media echo chambers, as described in a 2016 Washington Post piece on the topic, allow people to amplify or “promote their favorite narratives, form polarized groups, and resist information that doesn’t conform to their beliefs.”10 A 2016 study analyzing 376 million Facebook users’ interactions with over 900 news outlets found that people often seek news information from only a few sites, resulting in “major segregation and growing polarization in online news consumption.”11 Essentially, people tend to “seek information that aligns with their views.”12 This feeds our confirmation bias which, as discussed in chapter 3 (Psychology of the Anti-vaccine Movement), is the tendency to embrace information that confirms our preestablished beliefs while rejecting information that casts doubt on those beliefs.
The echo chamber also lulls us into the false sense that “everything” we are reading on our feeds supports a particular notion and that “everyone” feels the same way we do. So, in the case of anti-vaccine sentiment, if a patient searches the terms “toxins in vaccines” and happens upon the NVIC website, they are more likely to
receive further articles on their Facebook feed going forward that would call into question the safety of vaccines. Or, if they post something that supports an anti-vaccine point of view, and they are part of a like-minded group, they will receive “likes” for that viewpoint that furthers the sense that theirs is a commonly-held belief, because that like-minded group is unlikely to be offering up the opposing point of view. Certainly, people on both sides of any debate can fall victim to the echo chamber effect. However, it is helpful for us, as medical providers, to be able to discuss this possibility with our patients so that they can recognize when it may be impacting their medical decision-making.
receive further articles on their Facebook feed going forward that would call into question the safety of vaccines. Or, if they post something that supports an anti-vaccine point of view, and they are part of a like-minded group, they will receive “likes” for that viewpoint that furthers the sense that theirs is a commonly-held belief, because that like-minded group is unlikely to be offering up the opposing point of view. Certainly, people on both sides of any debate can fall victim to the echo chamber effect. However, it is helpful for us, as medical providers, to be able to discuss this possibility with our patients so that they can recognize when it may be impacting their medical decision-making.
TACTICS AND TROPES
Merriam-Webster defines a trope as a “common or overused theme or device.”13 Tactics used by the anti-vaccine movement are rife with tropes that are used to introduce doubt and fear into patients’ minds, leading them to question the efficacy and safety of vaccines. It is important to be familiar with these as we discuss vaccine information with our patients and as we move forward in our fight against misinformation and pseudoscience. In addition to reviewing their most common tactics, we will also look at the most influential people in the anti-vaccine movement. As stated by Sun Tzu, a Chinese military strategist and Taoist philosopher from the 6th century BCE,14 “Know thy self, know thy enemy. A thousand battles, a thousand victories.”15 Only in knowing the tactics and faces of our anti-vaccine “enemy” can we truly hope to win the battle to keep our patients healthy and safe.
The 2016 word of the year by Oxford Dictionaries was “post-truth.” It is defined as “relative to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief.”16 This appeal to emotion and personal belief occurs all the time in the vaccine discussion and is partly why the anti-vaccine movement has been so successful in attracting unsuspecting parents to their cause. KO, in chapter 4, There and Back Again: How Anti-vaxxers Change Their Minds, sums it up beautifully when she says “Fear is a powerful motivator, and when I was trying to find information about the safety of vaccines, I came across some pretty scary stories online about children who were allegedly injured by vaccines. We assume that parents know their children deeply, and when a parent claims their child changed drastically and immediately after a series of immunizations, I think our instinct is to believe that parent.”
There are numerous other tactics and tropes used by the anti-vaccine movement to sway people to their way of thinking. An article by Davies, Chapman, and Leask titled “Antivaccination Activists on the World Wide Web” categorizes these as Rhetorical Appeals, which include “evidence of authority and scientific rigour,” “emotive appeals,” and “evidence of conspiracy, search for truth” and Explicit Claims.7 These are described in detail in Box 13.2, where each type of appeal or claim is highlighted and examples given.
Now that we know what tactics and tropes are used to try to convince people that vaccines are unnecessary and unsafe, let’s look at the prominent figures in the movement. I have chosen to discuss those most commonly encountered during my research. Certainly, there are many others that you may come across, locally or online. However, the individuals described below are those with the deepest pockets and the greatest sphere of influence, both nationally and internationally (Box 13.3).
Box 13.2 Anti-vaccine Tropes and Tactics
Adapted from Antivaccination Activists on the World Wide Web by Davies P, Chapman S, Leask J. in Archives of Disease in Childhood.7
Rhetorical Appeals
1. Evidence of authority and scientific rigor:
Quasi official: organizations with names implying authority or official status
The National Vaccine Information Center (NVIC)
“Scientific” references: reference literature from established medical journals (frequently with cherry-picked data to support their claims), alternative health literature, and works published by anti-vaccination “experts”
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