Tuesday, May 19, 2015

Don't Call it "Research"

It has become standing advice in all camps—from pediatricians and public health officials to anti-vaccine mouthpieces and chiropractors: do your own “research” on vaccines and then come to a reasoned decision about whether you want to vaccinate your child. Imbedded in that directive is the suggestion that all parents have both the specialized education and critical thinking skills required to do biomedical research.

Of course that’s not what medical professionals are suggesting when they tell their patients to "research" vaccines. But they have acceded to the widespread misuse of the word “research” to describe web-based information gathering, and in doing so have tacitly agreed that Google searches, Facebook surfing, and reading the CDC’s website is equivalent to research. It’s not research. It’s reading. It’s information gathering, the way we gather information to build our family tree. It’s trying to making sense of complex scientific information the vast majority of us were not educated specifically to deconstruct. But it’s not research, at least not the way the term is used in medicine and science.

Part of the problem is the way the word has been loosely applied to any kind of information gathering—from genealogy to looking for the best esthetician in New York, we tend to refer to our efforts as “research.” And in some ways, perhaps, this term could be considered accurate in such contexts. After all, Merriam Webster defines research merely as a “careful and diligent search.” Most people would agree, however, that there’s a difference between a "careful and diligent" search for the best CSA and a "careful and diligent" internet search on whether vaccines are safe. That’s because scientifically valid information about vaccines is based on scientific research, which can be defined as the application of the scientific method to the investigations of natural phenomenon.

I believe it's time to change the language we use when we encourage parents to use available information to make a decision about whether to vaccinate their child. Let's take the word "research" out of the conversation and thereby avoid hinting that such information gathering is equivalent to the work done by vaccine researchers, biologists, and medical professionals.

I say this as a veteran “researcher” myself. I’m a parent of two children, and when my first was born, I was what is now termed “vaccine-hesitant.” I wasn’t fervently anti-vaccine, but I was scared. So I began reading about vaccines, and, like many new parents, I simply typed “vaccines” into Google. The first site that came up was the vaguely governmental-sounding National Vaccine Information Center. It described itself as a “clearinghouse” of vaccine information. The only thing that tipped me off to its anti-vaccine stance at first were the advertisements for Joseph Mercola’s alterna-empire. (Tanning beds, anyone?) Still, I deposited this late-night study into my “research file.” I spent hours upon hours reading until my eyes crossed. Deep down, I knew when I was in over my head, though I pretended to myself that I understood what I was reading when I began to gather research articles. Though the NIH helpfully links to any number of research papers on vaccines, they don't provide a translator.

Still, if anyone had ventured to tell me at that time that what I considered diligent research was not, in fact, research, I would have been offended. After all, I was good at it. I’d written a well-received book of narrative journalism that had required several years of archival research, interviews, even a Freedom of Information Act request resulting in reams of hydrological charts and paperwork, all of which I carefully studied. I had a Master’s degree from an Ivy League university. I was good at this.

It was only much later, when I went from vaccine-hesitant to vaccine advocacy, that I realized just how arrogant I’d been. And it all came down to this: I thought I knew more than my doctor. Or if I didn’t know as much as she did, I could catch up with a few weeks of serious "research." Her medical school education, her extensive reading, and her long clinical experience meant nothing to me if I could not come to the same conclusion about the safety and effectiveness of vaccines using what information I had at hand. 

Astonishingly, medical providers are enabling this point of view—for understandable reasons. One of the reasons parents were opting out of vaccines was because doctors were often not taking their concerns seriously. Part of this, I suspect, has to do with the fact that the science is so overwhelmingly clear that vaccines are beneficial to the human species. Vaccination became as foundational a part of childhood preventive medicine as a weight check or an eye test. Questioning the necessity of a footing may strike an engineer, for example, as bonkers. But a question about its safety should be heard. 

And too often it wasn’t. The result was more and more parents choosing not to vaccinate their children. Now the pendulum swings wide the other way, where many medical providers and public health officials fear that the only way to bring vaccine-hesitant parents back into the fold is to put their abilities to discern the safety and efficacy of vaccines on par with that of their providers. Hence, the gentle suggestion for parents to “do their own research.” But we are not on equal footing when it comes to science. That’s not how science works. We shouldn't blindly follow the recommendations of our medical providers--frankly, we shouldn't do that in any realm of our life. But at the same time, we need to understand our limitations. And in the vaccine conversations, few of us parents have acknowledged the fact that we might not know as much about vaccines as the people who study them.

In fact, we live in a society that grapples with basic scientific literacy. Take, for example, the fact that in a recent Pew Research study on Americans’ grasp on science and technology issues that fewer than half of Americans knew that an electron is smaller than an atom. More than 80% of Americans did not know that nitrogen made up most of our atmosphere.

The “highly educated” gambit doesn’t work when it comes to vaccines, either; if anything, it makes us, as parents, more susceptible to falling into the anti-vaccine camp because we overestimate our abilities to research. We think because we researched Ovid’s The Metamorphosis for our thesis that we can fully understand why a paper about the peripheral blood mononuclear cells of autistic children and whether the measles virus persists in them exonerates the MMR vaccine from any connection to autism.

So I want to propose something that in this day of conspiracy theories and artisinal, small-batch internet research, is radical: people with medical degrees know more about medicine than those of us who don’t have medical degrees. More, they know how to write research papers on immunology, vaccinology, or infectious diseases, and they know how to read and make sense of them. The vast majority of us do not. 

In this time of measles outbreaks and pertussis clusters, it's time for parents to practice a little humility and trust what we do know: vaccines are one of the most successful medical interventions in modern history, they save countless lives, most of them in the developing world, and they have a long and proven track record of safety. And the research on this is clear.