One of the biggest changes in healthcare in recent times is the emphasis on decision-making. Patients and doctors now work with big menus. It’s mostly a good thing, but a certainty with increased choice is increased conflict.
As a doctor who works in a field–electrophysiology–that is almost exclusively preference-sensitive, I’ve grown increasingly interested in why and how humans choose things. After twenty years of bearing witness to medicine’s wins and loses, I’ve come to realize how little I know about this central theme of doctoring.
The list of mysteries I think about is a long one: Why do doctors beat the drum about drugs that have absolute benefits of less than 1%? How did we collectively (patients, doctors, society) come to ignore the tragedy of death-by-ICU? Why do we assume an 85-year-old benefits from a treatment studied in 50-year-olds? How does a great and proud nation allow itself to spend so much on healthcare and get so little health? You get the picture.
Yet, none of these mysteries are in the same category with the conflict surrounding vaccines. The why and how of where we are with vaccines boggles my mind. So bad is this place that one can hardly write about the topic. Just the word vaccine stirs controversy.
Let’s step back for a moment and look at the issue of public distrust of vaccines. On the one hand is this seemingly unassailable statement from the American Academy of Arts and Sciences:
Vvaccines represent a significant scientific triumph and remain a powerful tool for preventive childhood health.
Despite, or perhaps because of, such ‘triumph’ and ‘power,’ public distrust of vaccines grows stronger. Some childhood infectious diseases, once virtually abolished, have come back. And it’s wealthy well-educated communities (Orange County, CA) that are most affected. Why, and how, did this happen?
Another question: How did this debate got so rancorous? The middle ground is gone.
If you write a post that cites evidence for vaccines, not triumph mind you, just evidence, you can expect harsh rebuke from vaccine doubters.
On the other hand, let’s say you wrote a post on vaccines that also mentioned shared decision-making. Or, you got really courageous and asked how other countries vaccinate less but have better measures of childhood health. Here, you can expect swift and immediate scorn from doctors. A prominent journalist recently messaged this to me regarding mainstream medicine’s view of vaccine distrust: “Every legitimate doubter leads to 10 people who are just off the reservation. So they don’t tolerate dissent.”
So here are some more questions. What’s wrong with the vaccine message? Why does it seem that the more the scientific community pushes vaccine evidence the worse the public distrust gets? Why is that educated people line up to take dubious, risky, and expensive treatments, but many won’t take a vaccine? Why is it that even though Guillain-Barré syndrome is ten-times more likely after influenza infection than influenza vaccine, people remain squeamish about taking the shot? Social media experts like to talk about the wisdom of crowds; what is it, then, that this many doubters see? Could it be that when push comes to shove (taking the shot), some people care little about population data? Why do celebrity docs, such as Oz, boast millions more followers than any evidence-based doctor? Could Oz and his ilk teach us something about connecting with people?
Finally, don’t you, too, think about what this ‘phenomenon’ will look like ten years from now? I used the big word phenomenon because it fits. The growing distrust in vaccines is indeed “a situation that is observed to exist or happen, esp. one whose cause or explanation is in question.”
The good news is that three smart people, Seth Mnookin (MIT), Barry Bloom (Harvard) and Edgar Marcuse (University of Washington) will lead a multidisciplinary committee of experts drawn from medicine, behavioral science, communications, science history, and journalism, to study the issue of how public perceptions of childhood vaccines are formed. Dr. Mnookin said something impressive in this MIT press release:
In the years after my book, “The Panic Virus,â€Â was published, I was asked to take part in a number of workshops in which the participants discussed strategies for confronting vaccine fears spurred by misinformation. After attending several of these gatherings, I realized the approach was somewhat hypocritical: Here were some very smart people essentially talking about their instinctual responses to addressing the fact that some parents rely on instinct rather than data to make decisions about vaccination.
I say it’s about time we look at why and how we got to this place. My hunch is that we are going to learn something useful about decision-making and communication.
JMM
8 replies on “The why and how of public distrust of vaccines…Surely, questions worth asking”
Anecdotes are powerful, very powerful.
Statistics are dry, frequently not intuitive, and even people with some introductory background in statistics often misunderstand them.
History, even within the last 100 years, isn’t well understood either.
I wonder when we’ll stop talking about vaccines as a homogenous group. Would we have a debate about any other class of drugs without recognizing that all reasons for use aren’t equal, and all drugs in a class don’t share the same properties?
A one size fits all position on anything strikes people as too simplistic to be accurate.
Problems like this cause my mind to drift back to a book called “Influence: The Psychology of Persuasion” The book is worth reading, but there is a video summary too: https://www.youtube.com/watch?v=cFdCzN7RYbw
A relevant, short read: “The Science of Why We Don’t Believe” by Chris Mooney
http://www.motherjones.com/politics/2011/03/denial-science-chris-mooney
Great essay, and Joe’s point above is brilliant. Of course, vaccine researchers targeted first those diseases that caused the most death and disability (famously starting with a kind of inoculation for smallpox invented by Muslim physicians several centuries ago). Therefore, it’s to be expected that newer vaccines have lesser benefits – and in two cases, possibly no net benefits.
Some vaccine advocates screech that you’ll deserve to have your kids die if you don’t vaccinate them against the deadly disease of chickenpox. I am old enough to remember when everyone got chickenpox and while it was not fun, severe complications were rare enough that most of us never heard of a case. (Compare that to the complication rates for diphtheria and polio.) OTOH, the disease is much more dangerous in adults, and the vaccine doesn’t last very long. Kids who get it are – or had better be – embarking on a lifetime of “booster shots.” Already, many Americans avoid getting medical care for actual, current problems because of the cost. How many healthy adults go in regularly for vaccinations? Can we guarantee the kids of today’s poor that they’ll have access to those booster shots for their whole lives, no matter what our post-imperial economic trajectory might be?
Another iffy one is rotavirus. The first problem is ecological: prevalence of competing viruses may increase as rotavirus is suppressed, so that in the long run one case of rotavirus infection prevented does not equal one case of diarrhea prevented. Second, two new studies have confirmed that the new vaccines may still jack up the rate of intussusception by an order of magnitude. Since very few kids die of diarrhea in a society with clean water and access to supportive health care when needed and anesthesia in infants causes permanent reductions in cognitive ability and perhaps lifetime risk of Alzheimer’s, many parents’ values would say that it was better to have thousands of cases of diarrhea than one surgical complication of the vaccine.
Say any of that to the scientism crowd, and they start bellowing about how you want kids to die of polio. That’s why I don’t say anything; it’s not my issue, and it’s not worth it. But I do wonder whether those who get bellowed at who, like many parents, are about my age, old enough to remember chickenpox epidemics but not diphtheria epidemics, judge the rhetoric solely by their own experience of “deadly vaccine-preventable diseases” and assume that in fact diphtheria and polio were no bigger problems than chickenpox.
Sad to say, but the “middle ground” has been lost on LOTS of issues; not just vaccines.
I see the problem as trust and not just in the vaccine debate. Over the past decade and more, third parties and their intrusive protocols has gotten in the way of the art of medicine. Physicians now rarely think for themselves, but instead are coerced or mind-numbed into following the direction of industry/government/insurer guidelines.
The mistrust is that individuals no longer trust physician advice and look for other opinions which in the past used to be given freely by their physicians.
If we can gain the trust of our patients back, without using scare tactics, we can do a better job providing all types of care.
But until that point the vaccine debate along with many other healthcare debates will continue to put physicians on a downward slope.
Yes, it doesn’t help to hear that physicians working for corporations are financially punished for failing to aggressively overtreat elderly patients to pharma-influenced numerical goals, coerce USPSTF-non-recommended screenings, etc. I have come to feel genuinely very sorry for the plight of the abused corporate physician. But – knowing all this, and having seen a loved one victimized by a pack of them – could I ever hear a recommendation for prophylactic anything from one of them without feeling deep suspicion? We are all being taught to distrust one another.
I have not gotten an influenza vaccination my entire adult life and I’m 63. Neither have I contracted the flu. What put me off of vaccinations permanently was the swine flu manufactured panic of the 1970’s. I believe, with certain exceptions such as some childhood vaccinations, that much of the push to vaccinate is driven by the pharmaceutical industry. Many (or most) doctors don’t seem to question it either and just vaccinate everything and everybody that crosses their paths. Someone somewhere along the line has to apply a little critical thinking here and not just blindly follow the dictates of the pharmaceutical industry, and that goes for not only vaccines, but other medications as well.
“Why do doctors beat the drum about drugs that have absolute benefits of less than 1%?”
Let’s imagine that I design a new ablation catheter that reduces the risk of developing an atrioesophageal fistula (AEF) complicating AF ablation to 0 from 0.8%. (This significantly over-estimates the actual risk of developing an AEF, but let’s just suppose that it’s accurate for this thought experiment.) This would represent an absolute benefit of < 1%.
Which catheter should be used for AF ablation procedures: the standard catheter, associated with a 0.8% risk of AEF, or my new catheter?
Perhaps the answer depends on what this catheter might cost. But what if the situation is carefully analyzed and my new catheter is found to be cost-effective since investigating and treating AEFs, as uncommon as they might be, is very costly? And what if, given the large volume of AF ablations performed, the use of my new catheter could prevent hundreds (or thousands?) of such deadly-serious complications?
Is my new catheter worth promoting, or not?
I hope that you see my point: the mere fact that the absolute benefit of a treatment is < 1% doesn't make it insignificant, nor does it make the treatment that offers such a small but real benefit equivalent to a treatment that doesn’t. I argue that doctors *should* be interested in promoting treatments even if they offer a < 1% absolute benefit particularly when the benefit is a reduction in a serious outcome and when that treatment is cost-effective. Another scenario where even small reductions in harms are especially important is in primary prevention interventions where the onus to do no harm is greatest.
I have elaborated on these ideas at my blog where I’ve tried to gently challenge your claim that NOACs are equivalent to warfarin because they are “99% the sameâ€.
http://skepsisdoxa.blogspot.ca/2014/04/novel-oral-anticoagulants-truth-is-in.html