What would we do without the Internet?
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.
A while ago, 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.
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, 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. As usual, I was all over Kata’s study when it came out, pointing out that there was only really one tactic or trope that I think she missed, specifically the recent coopting of the term “denialism” for antivaccinationists’ own, as Ginger Taylor does when she uses “vaccine injury denialist” as a trope. 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.
Of course, 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.
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.