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Dr. Google and Mr. Hyde

Anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that “my ignorance is just as good as your knowledge.”

Isaac Asimov

The first principle is that you must not fool yourself – and you are the easiest person to fool.

Richard P. Feynman

The Internet.

What would we do without it? It’s become so necessary, so pervasive, so utterly all-enveloping that it’s hard to imagine a world without it. Given how much it pervades everything these days, it’s easy to forget that it wasn’t that long ago that the Internet was primarily the domain of universities and large research groups. Indeed, the Internet hasn’t really been widely and easily available to the average citizen for very long at all. Go back 20 years, and most people didn’t have it. For example, Netscape Navigator, the popular browser that made the Internet accessible, wasn’t released until 1994. Amazon.com, an online store I can’t imagine living without now, didn’t sell its first book until 1995, and I didn’t discover it until 1996 or 1997. Google, that ubiquitous search engine that everyone uses, wasn’t incorporated until 1998. Now, less than 14 years after Google was incorporated most people have the Internet in their pockets with them in the form of mobile devices that have computing power undreamed-of in the 1990s and can access the Internet at speeds that increasingly blur the line between landline access and mobile computing. It’s been an amazingly fast social and technological revolution, and we don’t yet know where it will take us, but we do know that it’s not going away. If anything, the Internet will continue to become more and more pervasive.

Like all major new technologies, the Internet has a good side and a bad side. In many cases, the same property is both good and bad, and one place that this is particularly true is in medical information. The Internet has an abundance of medical information, all there for the reading and learning, and various discussion forums that began with online BBS services and the now mostly obsolete global discussion community of Usenet allow people from all over the world who would never have communicated directly with each other before to share information and experiences. Unfortunately, there is a dark side to this. Regular readers of this blog know what that dark side is, too. The same technology that allows reputable scientists and doctors to publish reliable medical information to the world at very low cost also allows quacks and cranks to spew their misinformation, nonsense, pseudoscience, and quackery to the whole world at very little cost. And, boy, do they ever! In many ways, the quacks are a far more effective online presence than skeptics and supporters of science-based medicine. I mean, look at SBM itself. We’re still using a generic WordPress template. Now look at an antivaccine website like The International Medical Council on Vaccination or Generation Rescue or the antivaccine blog Age of Autism. Look at quack websites like NaturalNews.com The comparison, at least when it comes to web and blog design, is not flattering.

The reason I started thinking about these issues is because at The Amazing Meeting this year, Steve Novella, Harriet Hall, Rachel Dunlop, and I will be discussing these very issues at what has become a yearly event at TAM, the SBM workshop. Coincidentally yesterday, a mere three weeks before TAM, I happened to be perusing the antivaccine crank blog Age of Autism, when I came across a post by someone named Cathy Jameson entitled Look It Up. In it, Ms. Jameson, after extolling the glories of the Internet and how it makes our lives easier (which it arguably does in so many ways), laments how she perceives herself to be treated by medical professionals when she tells them she’s looked something up on the Internet. In fact, she seems to think that doctors don’t want parents of children with autism to be looking things up on the Internet:

I know that some people don’t appreciate what’s available on the internet to an autism parent, nor do they want those parents anywhere near it. Those answers, that research, these numbers, that cover up. What a parent finds online is likened to a national secret. Looking up their child’s signs, symptoms, diseases or potential diagnoses is just not okay. The internet is not a viable source and its use should never be allowed by parents, especially autism parents. Heaven forbid they stumble across something beneficial for their child! And, they better not think that they can share that information with anyone, especially with the doctor they’ve hired to help them.

For a parent to admit they might have looked something up “online” while face-to-face in an exam room with their child’s medical provider—you would have thought it criminal! It should be outlawed! And, don’t dare tell anyone else you did that. EVER. If you do? Oh, boy. The parent who did take the time to do a little bit of research is given the hairy eyeball, the condescending how-dare-you facial expression or worse, a lecture about how it’s not their place to do that kind of research for their own child. Hrmpf!

While this is primarily a straw man argument (no doctor that I would know would tell a parent not to go on the Internet), there is a grain of truth to the extent that experience has taught us that a lot of what parents like Ms. Jameson find on the Internet is either wrong, incomplete, or, worse, dangerous quackery. The reason that pediatricians sometimes have a hard time not rolling their eyes or sighing when a parent like Ms. Jameson tells them that she has some information that she found on the Internet is that they know that what will follow is likely to be the same misinformation that they’ve had to try to refute time and time again. As hard as it is to believe, doctors are human, too. We have our moments of weakness, when we have a hard time not showing our frustration at the same pseudoscience that we’ve heard time and time again. Arguably, we need to try our hardest not to let such feelings bubble to the surface when we are in a room interacting with a patient or parent, but we do sometimes. However, there’s also the matter of perception. A quite reasonable comment to a parent pointing out that the information she has discovered online is not scientifically valid and comes from a website that is not reliable is interpreted as a fascistic crushing of her freedom of speech and assembly. For instance, take a look at this comment after Ms. Jameson’s post by AutismGrandma:

All of this reminds me of Germany in WWII, where Nazi government radio information was the only sanctioned legal option. Anyone caught listening to Radio Free Europe was thrown into a concentration camp. Were Jewish people and many others being killed with poison gas in concentration camps? Radio Free Europe said Yes it’s true. Are babies and children being poisoned with vaccines? The INTERNET says Yes it’s true.

Because telling a patient or parent that a website is full of nonsense, no matter how diplomatically one tries to do it, is exactly like crushing all competing sources of information and killing Jews in gas chambers. Sadly, that is the sort of rhetoric that is common in the quackosphere in general but in particular the antivaccine crankosphere. But what to do? Most parents and patients aren’t as paranoid and hostile as AutismGrandma. They’re just regular people who want reliable information about various conditions they or their children suffer from but are not sufficiently scientifically sophisticated to separate the good health information from the bad. How do we help them do that? Certainly Google and other search engines are little or now help. There is no filter to them other than the number of incoming links. A quack site to which a lot of other sites link, particularly if they are sites that also have a lot of incoming links and thus a high Google rank, will show up very high on Google searches. The scientific value of content is basically irrelevant. I’ve seen Mercola.com, Age of Autism, or NaturalNews.com links show up in searches right above or below links from reputable websites like the NIH, CDC, or the American Cancer Society. The democratization of information on Google is the very fulfillment of Isaac Asimov’s warning so many years ago.

Vaccine misinformation online

If there’s a medical topic about which there is more misinformation available on the Internet than vaccines, I’m hard pressed to think of it. The only topic I can think of that even comes close is cancer. Antivaccinationists are vocal and active, particularly online. They’re very good at getting their pseudoscience-laden websites listed high on Google search results. Indeed, our very own Mark Crislip wrote about this very issue a couple of years ago, when Anna Kata of McMaster University published a study about vaccine misinformation on the Internet. Amusingly, Mark pointed out that Kata is an anthropologist, and he needs an anthropologist to help him explain a culture (the antivaccine underground) in which science and the facts do not matter. In any case, the study examined the specific sorts of misinformation that are easily found online, with 100% of antivaccine sites stating that vaccines are dangerous and contain poisons, and the vast majority of them claiming that vaccines do not work.

Kata is also the author of a recent study published in Vaccine entitled Anti-vaccine activists, Web 2.0, and the postmodern paradigm – An overview of tactics and tropes used online by the anti-vaccination movement. Scott Gavura has already discussed it, but that won’t stop me from briefly using it as a means of pointing out the sorts of misinformation that can cause physicians to react negatively to patient Internet research.

Kata’s opening sets the stage:

Vaccinations are a significant public health achievement, contributing to dramatic declines in morbidity and mortality from vaccine-preventable diseases [1]. However, by reading certain websites, one might be persuaded to think the opposite – that vaccines are actually ineffective, useless, or even dangerous. These are merely some of the arguments posed by the anti-vaccination movement, an amorphous group holding diverse views that nevertheless shares one core commonality: an opposition to vaccines. The popularity and pervasiveness of the Internet today has facilitated the transmission of such beliefs.

Many people search online for health information, and the information found impacts patient decision-making; it is therefore essential to understand what is shared online. This paper provides an overview of how the new generation of the Internet (Web 2.0) and its emphasis on user-generated content has combined with characteristics of the current postmodern medical paradigm, creating a new environment for sharing health information. The anti-vaccination movement has taken advantage of this milieu to disseminate its messages.

Kata then launches into a discussion of how Web 2.0 has proven to be a two-edged sword in medicine, just as I’ve pointed out above that it is. As I’ve discussed before on SBM several times, paternalism is on the decline and medicine is moving towards a model of shared decision-making between the physician and patient, a process facilitated by the availability of more high quality information about health on the web than has ever been so easily available before. Unfortunately, that movement can be (and often is) easily hijacked by the dark side of Web 2.0. While 20 years ago, medical knowledge was largely bound to textbooks, journals, and medical institutions, today, not only is it available on many websites but even the primary literature is in many cases available to the public, thanks to laws requiring that NIH-funded research be deposited in PubMed Central and that clinical trials and their results be deposited in ClinicalTrials.gov. Unfortunately, the power of the Web 2.0 to empower patients is also the power to confuse and misinform. As Kata points out, postmodern attitudes, in which science-based medicine is just “another way of knowing” can combine with new “expert systems” in which people without advanced training come to think themselves just as much “experts” as the real experts. Although Kata doesn’t mention it, it’s the Dunning-Kruger effect writ large, the arrogance of ignorance.

Kata also correctly identifies most of the common tropes and tactics of the antivaccine movement. First, the tactics:

  1. Skewing the science. This involves cherry picking studies, denigrating science that doesn’t support an antivaccine viewpoint, and endorsing bad science that supports antivaccine agendas.
  2. Shifting hypotheses. Otherwise known as moving the goalposts, this involves continually changing the standards of evidence deemed necessary to convince antivaccinationists of vaccine safety so that they can’t be met and constantly coming up with new causation hypotheses that share only one thing in common: it’s always about the vaccines. Always. No matter how the hypotheses or goalposts shift, it always boils down to: The vaccines done it!
  3. Censorship. This is an extreme characteristic of the antivaccine movement. For instance, Age of Autism does not allow much in the way of dissenting comments. The Autism One yearly quackfest routinely kicks out those its organizers perceive as enemies, even though they follow the rules and don’t disrupt anything. For example, last year Ken Reibel and Jamie Bernstein were expelled. Just last week, the antivaccine group Canary Party refused to register a skeptic, P.Z. Myers, who wanted to attend its meeting in Minneapolis next month. In the meantime, they go ballistic when one of their own is asked to leave a scientific function. We’ve seen this several times, such as when AoA and its hanger-on Ginger Taylor wailed and gnashed their teeth over Paul Offit’s and Seth Mnookin’s having asked AoA’s one trick pony irritant to leave and Offit’s accurately characterizing him as a “stalker.” I’d take their complaints slightly more seriously if the antivaccine movement didn’t so ruthlessly censor its perceived enemies and refuse to let them anywhere near their crank venues. On the other hand, I can sort of understand why they do it. After all, if there are talks about using bleach enemas to cure autism or by a Nobel laureate turned crank who now buys into homeopathy and also thinks that autism is due to bacterial infections, one can see that they definitely have something to hide. It’s not for nothing that I refer to Autism One as a quackfest.
  4. Attacking the opposition. The antivaccine movement is particularly incessant in this tactic, in my experience. I’ve lost track of how many times I’ve been attacked or had antivaccine cranks try to cause me annoyance at my job by e-mailing my bosses. Almost exactly two years ago, a bunch of antivaccine cranks, “inspired” by a false accusation of an undisclosed conflict of interest from Jake Crosby, tried to get me fired from my job through a campaign of e-mails, phone calls, and letters to the board of governors at my university. And what I’ve experienced is minor indeed compared to what someone like Paul Offit has experienced.

One tactic that Kata left out is one that I’ve noted before. It’s not a tactic unique to the antivaccine movement, but antivaccinationists certainly use it. I’m referring to crank conferences gussied up to look like legitimate scientific conferences. For example, we have the yearly quackfest known as Autism One every year in Chicago around Memorial Day. Recently, Autism One has joined forces with the health freedom movement, combining an Autism One conference with the Health Freedom Expo from March 2-4, 2012 in Long Beach, CA. In this, we might be seeing an even more obvious sign of the scientific bankruptcy of antivaccinationists in that Patrick “Tim” Bolen was featured on a “Vaccine Panel.” I thought that having Dan Olmsted chair a panel called Malfeasance in the Media that includes Tim Bolen, David Lewis, and Andy Wakefield was bad enough. After all, that’s a group that could give the masters’ how-to-do-it course on media malfeasance. Then there was “movie night,” which featured the Burzynski movie, as well.

Now, here are the tropes:

  1. “I’m not antivaccine; I’m pro-safe vaccines.” Yes, indeed. This one is the biggest, baddest, most irritating trope of all, repeated by everyone from Jenny McCarthy to J.B. Handley to Barbara Loe Fisher. A variant of this is to liken vaccines to cars and say that “I’m not ‘anti-car,’ I just want safer cars.” Not a good analogy. A better equivalent would be if they demanded absolute safety of cars and refused to use them unless GM, Ford, Chrysler, Toyota, Honda, et al swear that they’ll never be injured in a car crash.
  2. Vaccines are toxic. A.k.a. “the toxin gambit.”
  3. A demand for absolute safety.
  4. A demand for absolute “proof” that vaccines are safe.
  5. “Vaccines didn’t save us,” one of the more intellectually dishonest of many intellectually dishonest tropes used by these cranks.
  6. Vaccines are “unnantural.”
  7. Choosing between “vaccine injury” and disease. Jenny did this famously when she said vaccination are a choice between autism and infectious disease and that she’d take the measles.

Kata lists more of these tropes, and this is one case where I can’t think of any that she missed, at least not major ones, except for perhaps the recent coopting of the term “denialism” for their own by antivaccinationists. The term “denialism” is used to describe movements that deny well-established science based on flawed reasoning, pseudoscience, and misinformation, such as evolution denialists or anthropogenic global warming denialists. Kata also didn’t emphasize the concept of “misinformed consent” enough, in which under the guise of “informed consent” antivaccine pseudoscience is used to make vaccines seem more dangerous and less effective than they actually are.

It’s not just vaccines, of course, about which there’s copious easily locatable misinformation on the Internet. I simply chose to spend most of this post discussing vaccines because Ms. Jameson’s post “inspired” me to and, of course, because there appears to be the most research out there about how the Internet can affect parents’ attitudes to vaccination and how parents use it to find information.

My specialty is, of course, breast cancer; so I try to keep up with what sorts of misinformation and quackery are making the rounds on the Internet so that if I’m asked about them I can respond intelligently (or at least try to appear to). Recently, I noted that a particularly nasty form of cancer quackery, Cantron, is making the rounds. Then, of course, Stanislaw Burzynski’s “antineoplastons” wax and wane in popularity, seemingly depending upon how much he is in the news. Throughout all that, certain tactics and tropes remain the same in cancer, such as claiming that chemotherapy doesn’t work, that most oncologists wouldn’t choose chemotherapy for themselves, that there are “natural” cures for cancer that the [INSERT ONE] FDA/big pharma/government/cancer industry/AMA/etc. don’t want you to know about. Indeed, just yesterday I found a website Healing Cancer Naturally, which I might have to discuss in more detail in the future. In the meantime, it will suffice to point out that it touts quackery like detoxification, choosing the right cancer treatment using applied kinesiology, Max Gerson’s therapy, ozone and hydrogen peroxide therapies, and, of course, “energy healing.”

In fact, I sometimes think I should see if Kata would like to team up to do a similar study about cancer information on the Internet.

“Research.” You keep using that word. I do not think it means what you think it means

A large part of the problem with Internet “research” by patients and parents is that lay people have a very different idea of what “research” is than scientists and physicians do. I’ll show you what I mean by going back to what Ms. Jameson wrote:

Several incidents within a week’s time had me reeling about how some medical people guard the internet as if it was their own. Oh, that look of disdain they threw toward me when the word internet came out of my mouth. Give me a break! Not only do they sound ridiculous, they look ridiculous too as they tried to dismiss my well thought out, educationally minded, researched contribution about my son’s issues. It wasn’t rubbish. It most certainly wasn’t some back alley mumbo jumbo. What I shared was information found on credible sites and in online medical journals they too have access to.

Let’s for the moment take Ms. Jameson at her word and not quibble over whether what she considers to be “credible sites” probably differs greatly from what a physician would consider a “credible” site. Let’s assume that what she was showing her pediatrician was in fact nothing but studies from peer-reviewed journals or second-hand reports of such studies. Here’s the problem, and it’s a problem to which Mark Crislip alluded. To become a real expert in a field requires paying dues that go beyond doing some searches on Google and finding studies that confirm your preexisting beliefs. Yet, that is what patients and parents like Ms. Jameson do and call it research.

Indeed, a commenter named Bridget N. even basically admitted this, without actually knowing that that’s what she’s doing. First, she related a story in which she told her pediatrician that there were “aborted fetal cells” in vaccines and that vaccines caused autism. Apparently her pediatrician, if Bridget is to be believed, didn’t react that well. Here’s what Bridget did when she got home:

When I got home, I did a simple internet search, probably on Google or Yahoo, and with very few clicks of the mouse, I found the phamaceutical companies own documentation with regard to the aborted fetal cells. Detailed information was just a click away, but I was the moron for bringing it up?!

If you would like to see the sort of information that Bridget no doubt got from her search, simply type “vaccines aborted fetal cells” into Google. What came up for me first was a website called Children of God for Life. Several of the other links that came up on the first page included one from Mercola.com (Human DNA in Vaccines Linked to Autism), one from VacTruth.org (Aborted Human Fetal Cells in Vaccines), and a number of other fear mongering articles. In all fairness, the Catholic Church’s position statement on the issue also comes up; however, several of these posts imply or state that something about the “aborted fetal cells” is dangerous, when this is not true. No doubt she found the “review” of vaccines by Helen Ratajczak, who claimed that homologous recombination of fetal DNA from these cells cause autoimmune disease in a breathtakingly ignorant bit of scientific speculation. Then, if you Google “vaccine autism,” you will find a number of reputable sites. But you will also find a number of antivaccine sites, such as Generation Rescue, Infowars, and articles by David Kirby.

This is not “research.” It is motivated reasoning. The problem, of course, is telling the difference between real debate and research and cherry picking studies to defend one’s preexisting beliefs. The latter is motivated reasoning, and it’s one of the reasons that the educated are often prone to pseudoscience. They’re simply better at constructing reasonable-sounding arguments to defend their pre-existing beliefs.

It’s also a matter of context and quality control. Advanced training in science is not so much about learning a body of information, although that is certainly important. It is far more about learning the scientific method, learning how to do science. It involves learning to learn, how to do research, how to evaluate the quality of research, and, most importantly, how to put the results of new studies into the context of existing knowledge. There’s a reason it takes many years to learn these skills; they’re difficult and require a lot of work to acquire. There is no shortcut, either, not even the University of Google. True, there is a difference in medicine, specifically that it is more necessary to learn a large quantity of rote information. Medicine is not science, and most physicians are not scientists (I realize I get into trouble for pointing out this simple fact), but medicine should be science-based. What Ms. Jameson and Bridget N. do resembles research in the same way that doing a junior high school science project resembles doing Nobel Prize-worthy research, the difference being that the kid doing the junior high school science project is much more likely to gain an accurate insight into an aspect of science than Ms. Jameson or Bridget N. are to gain useful scientific insight into vaccines or autism.

What to do

It all once again boils down to a single question: What to do? The Internet is a Dr. Jekyll and Mr. Hyde phenomenon, as far as health information goes. When it’s good, it’s really, really good, and when it’s bad it’s horrid. That misinformation is out there, and it has an effect. As Scott Gavura has pointed out, it doesn’t take a lot of misinformation, and it doesn’t take very long for that misinformation to color people’s perception of the risk-benefit ratio of vaccines. Going back to the article by Kata, I note that she closes by remembering a famous quote by J.B. Handley, in which he likened Andrew Wakefield to “Nelson Mandela and Jesus Christ all rolled up into one,” after which she concludes:

Such a statement is a reminder that finding common ground with those who question, fear, or crusade against vaccines is no easy task. Their arguments are constantly shifting and evolving – this has been furthered by the fluidity of the Internet and social media. While acknowledging and correcting flawed arguments is important, an approach that moves beyond providing “the facts” is likely needed. With the anti-vaccination movement embracing the postmodern paradigm, which inherently questions an authoritative, science-based approach, “facts” may be reinterpreted as just another “opinion”. This issue is as much about the cultural context surrounding healthcare, perceptions of risk, and trust in expertise, as it is about vaccines themselves. For these reasons it is possible the minds of deeply invested anti-vaccine activists may never be changed; therefore it is for both the laypersons with genuine questions or worries about vaccines and the healthcare professionals who work to ease their fears that keeping abreast of the methods of persuasion discussed here is essential. Recognizing anti-vaccine tactics and tropes is imperative, for an awareness of the disingenuous arguments used to cajole and convert audiences gives individuals the tools to think critically about the information they encounter online. It is through such recognition that truly informed choices can then be made.

If there’s one thing I’ve tried to do on this blog, it’s to hammer away at each and every one of these common anti-vaccine tropes, as well as the not-so-common ones as well. The reason is that I don’t want them to be able to spread these tropes unopposed and unanswered, although the antivaccine movement is so protean and I have a day job that it seems like a Sisyphean task in which progress appears minimal. Yet the skeptic movement and physicians like Paul Offit appear to have had some effect, particularly in the wake of Andrew Wakefield’s downfall. At least anecdotally, I see less antivaccine propaganda making it into mainstream media reports, less blatant false “balance,” in which antivaccine propagandists are given equal voice with scientists as though there were two equivalent sides to the argument, and more skeptical articles that refute antivacicne myths and expose antivaccine autism quacks. Kata is right. The basis for such progress is the wide dissemination of good science about vaccines, refutation of the misinformation spread about vaccines, and shining the light of day on the various quacks who take advantage of the antivaccine movement.

In fact, one of the commenters after Ms. Jameson’s article states:

And if a physician cannot explain to me – in layman’s terms – why I’m wrong then how much does he/she really know about the subject? IMHO the mark of true knowledge is the ability to make the complex concept more comprehensible.

I realize that such a person is unlikely to accept even such arguments that make the complex comprehensible to the educated lay person, but being able to do that is the bare minimum that we as physicians must be accomplish. But even that’s not enough. We have to be able to communicate these concepts one-on-one in a manner in a manner that is not condescending or angry, as difficult as that is. Yet, even that’s not enough.

At least, it’s not enough in and of itself, but it’s a start.

Posted in: Science and the Media, Vaccines

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