"I'm not that kinda doc" is something I say often, usually when someone mistakes epidemiologist for dermatologist and eagerly rolls up their sleeves to get my opinion on a peculiar mole. I have to explain that I'm the kinda doc who is committed to creating the evidence that powers evidence-based medicine and effective public health.
I took it all very seriously. As a student at the Johns Hopkins Bloomberg School of Public Health, I believed our first goal was to save lives, and that there was a hierarchy of knowledge and leaders in place to drive us toward the most actionable evidence. That is, I thought that until...
Mom Was Wrong: Television Makes You Smarter
My revelation originated from the most credible source: Television. The remote had disappeared into the couch cushions during one slow Sunday evening in 2010, so I couldn’t change the channel when 60 Minutes came on. But when Leslie Stahl teased a story about a new public health epidemic, I perked up. “Hey, that’s what I do,” I thought, even getting off the couch to turn up the volume.
The segment revealed a “snus epidemic” that had caught the attention of everyone from the White House to NIH to main street. But as I watched, I noticed something strange. Neither Leslie nor any of the experts she interviewed ever answered the most basic question: Was snus even popular?
I've been on both sides of the health industry. I grew up working my grandfather’s tobacco fields and neatly fell into the target demographic for tobacco use: poor, trailer-trash, hillbilly. But thanks to some nasty bouts of nicotine poisoning from handling big burley tobacco and its sticky residue, I never once tried tobacco. That said, even with my insider knowledge, I’d never heard of snus. You probably hadn’t either. It’s a moist, smokeless tobacco pouch you place under your lip — sort of like dip, but neater.
An image of my father as a teenager working the same field I eventually worked alongside him.
Curious about snus, I went to NIH Reporter, a website that catalogs all NIH supported studies, to see what research was being done. Sure enough, millions were being spent on studying snus (by now it's more than $96 million) but no one seemed to be asking that fundamental question I asked earlier.
I kept digging. I remembered a demo I had seen for Google Insights for Search (a precursor to Google Trends), a tool experts were using to track flu outbreaks. If search trends reflect what people are thinking, maybe they could offer some clarity here too.
To my surprise, interest in snus had been declining for more than a year despite public health leaders expressing alarm and claiming there was an epidemic. Still, I needed a point of comparison.
Down a Reddit rabbit hole, I came across a new product: electronic nicotine delivery systems, what we now call e-cigarettes. Unlike snus, e-cigarettes were generating tons of Google searches, and interest was accelerating; many, many times more than snus. The world needed to know!
So I did what good epidemiologists do: I wrote up a brief report, added a few figures, and submitted it to a major medical journal. One of the big, career-making ones. “Everyone will want to know,” I told myself, imagining my study on the cover, Leslie Stahl interviewing me, and public health priorities shifting away from snus to e-cigarettes.
I got an auto-rejection.
That’s the kind of rejection where the editor doesn’t even read your submission, they skim it. I didn’t know that was a thing, so I naively followed up, reminding the editor about the 60 Minutes segment. “Don't you get it? Everyone is wrong and the data are in plain sight,” I pleaded.
Eventually (yes, I wrote many times), I got a response. The editor told me she had special insight into the truth: She knew someone in a band and occasionally went to their gigs. She’d never seen anyone using an e-cigarette at these shows, and therefore didn’t believe my claim that millions of people across the U.S. were searching for e-cigarettes on Google. She had, as she explained, seen snus.
I was flabbergasted. Was everything I held to be true about evidence-based medicine and public health false? It felt like the curtain had been pulled back, the Wizard of Oz revealed.
It took over a year for any journal to take the work seriously. Most offered similar anecdotal rejections, preferring their instincts over data. Still, I eventually published the first empirical study on e-cigarettes in the American Journal of Preventive Medicine with Kurt Ribisl and John Brownstein, two exceptional mentors who encouraged my first battle against conformity. But by then, public health had already missed the boat. And not because we lacked experts, or money, or data — but because the system failed at its core mission: Doing actual science.
Sadly, in the years since I've grown more familiar with failure. Like when my colleagues and I showed that the release of 13 Reasons Why on Netflix was linked to increased suicidal ideation. This included Google searches for “how to commit suicide” (up 26%), “commit suicide” (up 18%), and “how to kill yourself” (up 9%) during the days the show began streaming. The head of the Society of Behavioral Medicine publicly commented “this study does not demonstrate the show causes suicide. Just Google searches which is not at all surprising.” An authority on suicide told reporters “it’s important to not get freaked out that the show is causing people to go kill themselves. I don’t see the evidence for that.”
Netflix cited these experts when deciding to take no or minimal remedial action. Ultimately, it took 646 days for our findings to be confirmed by other researchers who studied actual suicide rates. But by then, “what did it matter?” as my frequent collaborator Eric Leas wrote in response to those researchers. The damage was done. Every time I speak about it publicly I tear up, remembering the time while waiting for a live interview I heard the voice of a father in my ear piece recounting how he found his daughter dead by suicide with the show playing on her bedroom television.
I failed him. I failed her. We failed them.
Recapturing Our First Love: Saving Lives
I’m not here to indict public health or medicine. The system gets it right sometimes. But the fact that it can get it so wrong makes my heart ache because behind the tables of data we study are real people and I’m still the same now as I was as a kid: I want to save their lives.
It’s why I’ve shifted from exclusively doing my own research to building tools that empower scientists, clinicians, and public health advocates to use and respond to data from many diverse sources, including surveys, EHR databases, insurance claims, patient registries, etc., in near real-time; something I’ve discussed at length before in Sensible Medicine. And it's why I want you reading this to remember when you first fell in love with medicine or public health.
The moral of The Wizard of Oz is that everything you truly need—love, courage, intelligence—is already within you. The moral for us in medicine and public health is the same. Let’s recapture our first love and use data to save lives. All we need is the courage to put science, not ego, at the center. To follow evidence, not our own intelligence. And to make sure that when the next signal appears, no matter what the crowd may think or what opinions we hold, we don’t miss it again. A wizard doesn’t control the future of medicine and public health, we all share in the responsibility and are more powerful than we think.
"because behind the tables of data we study are real people" This brought tears to my eyes. As I prepare training material for RNs who review medical neccesity for a Medicaid MCO, I repeat over and over that it isn't a case, it is a person, a son, a daughter a mother, a father. If they can't keep that in mind, they are in the wrong business.
Why did I go into nursing? To provide care to individuals who needed help healing.
The best line you wrote was "put science, not ego, at the center." It is a principle that can—and should—apply well beyond medicine. Thanks Dr. Ayers! PS I had never even heard of snus!