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The Age of Reason for Neurosurgery

2020; Lippincott Williams & Wilkins; Volume: 67; Issue: Supplement_1 Linguagem: Inglês

10.1093/neuros/nyaa223

1524-4040

Hui Gan,

Health and Medical Research Impacts

It has been my honor to serve as the 69th president of the Congress of Neurological Surgeons. I was humbled and excited by this opportunity to make a difference. In this address, I hope to stimulate a discussion about how we can and should practice, educate, and influence with reason. How as active voices for science and truth we can cultivate an age of reason for neurosurgery, and medicine as a whole. “A long habit of not thinking a thing wrong gives it a superficial appearance of being right.” These words, written by Thomas Paine, in the pamphlet “Common Sense”, which spurred the United States to fight for its independence, underscore the theme of this year's meeting. Paine would go on to pen The Age of Reason and the Rights of Man, which were some of the first examples of free rational inquiry and critical thinking in the United States. Today, we are living in a time of major upheaval with respect to trust in institutions, acceptance of fact, and recognition of expertise. Twenty-four hour news cycles, constant reminders to engage in social media, and a culture that rewards fame for fame's sake have all contributed to our current state of mistaking skepticism and critical thinking with denialism. Equal time is given to spurious viewpoints, which are touted as equivalent to verifiable truths. To be clear, skepticism is no vice. Suspicion of dogma is not, by itself, a crime. However, what has happened worldwide over the past several years has eroded trust in institutions and neurosurgery is no exception. Much of the loss of trust in the rigor of scientific inquiry can be traced to the deluge of information to which we are exposed. The amount of information being generated across the globe is staggering. Some 500 million tweets are sent daily for a total of 200 billion tweets per year. By the year 2020, the entire digital universe is expected to reach 44 zettabytes (that's a 1 followed by 21 zeroes). That is 40 times more bytes than there are stars in the observable universe. The ability to distinguish reputable information from misinformation is a nearly impossible task when information comes at us so quickly. One can appreciate how easily information can be manipulated. Simple things like reviews on websites can no longer be trusted. In fact, research recently published in the journal Science, has shown that on social media, false stories spread 70% faster than true ones. This phenomenon is not due to bots but rather posts by humans. Conspiracies can be easily concocted by unsubstantiated claims. Correlation is often confused with causation. Myth is reported as fact. Celebrity can now overcome a need for proof. The deluge of scientific misinformation parallels the increase in digital content. Medical journals, once a respected repository of rigorous scientific inquiry have become the source of significant misinformation and dubious peer review. InCites Journal Citation Reports now indexes more than 12 500 journals. Not all journals are equal. Even a journal with a good reputation can sometimes get it wrong. Predatory journals, a term coined only a decade ago, are now commonplace and difficult to differentiate from well-respected titles. These journals often charge a significant article processing fee, lack rigorous, if any, peer review, and take advantage of the “publish or perish” paranoia that pervades academic medicine. One might think that the accessibility of data would allow individuals to make rational choices about the information that they consume. However, there is virtually no regulation of this information. Our patients have more access than ever to the medical literature. However, the democratization of information may have actually undermined scientific trust and understanding. As neurosurgeons, we can differentiate high quality journals from low-quality ones but the public probably cannot tell the difference. Patients now arrive to our clinics armed with misinformation in the form of alternative therapies including potentially harmful supplements or ineffective treatments. This is all creating a situation we would never have imagined 20 yr ago—before the rise of the internet. And it is a sensitive issue—at a time when we are encouraged, and appropriately so, to engage more with our patients and to listen and involve them, this admirable goal has gone awry. Now our first burden is to teach them how to trust the experts, trust us, again. We must be prepared to help our patients differentiate the truth from hype. To reassure them that the treatments we use are based on the best available medical evidence, and why evidence is essential. “I have always strenuously supported the right of every man to his own opinion, however different that opinion might be to mine. He who denies to another this right, makes a slave of himself to his present opinion, because he precludes himself the right of changing it.” Paine wrote that we are entitled to our own opinions, no matter how different yours may be to mine, but we should all retain the right to change it. And we should, if persuaded by solid evidence. As physicians, we are not immune to the pitfall of holding rigidly to our biases. As science changes our practices we are often slow to adapt. Physicians in general continue to practice medicine that is contrary to the evidence. Each year JAMA publishes an update on medical overuse. How many times do you see gabapentin and its derivatives prescribed for sciatica? How about those 2 million-dollar robots your hospital is buying for kidney surgery? It turns out the evidence for their efficacy is very thin. Although neurosurgery is not immune to these hazards, to our credit, we have taken on trials of procedures that have eventually narrowed their scope of use. When a treatment shows promise, we have done the studies to verify their worth. But there may always be grey areas particularly when it comes to certain procedures. “But it is necessary to the happiness of man that he be mentally faithful to himself.” Has our judgment been clouded on occasion by economic incentives? Perhaps but we also get some things right including adopting technology knowing that the benefit will be there for our patients. Above all, when the challenge is adopting new ways of helping patients, it is incumbent on us to perform the appropriate studies when results look promising. No one else can validate or reject—that is a critical part of our responsibility as surgeons. An example from the neuro-oncology world is the EGFR variant 3 vaccine for the treatment of glioblastoma. Compared to historical controls, the vaccine showed tremendous promise but in a randomized controlled trial, it did not hold up. Neither did bevacizumab which also showed promise in Phase II trials but failed in phase III. What if we hadn’t conducted these important randomized trials? How many patients would have been exposed to harmful and useless treatments? Without firm evidence for their use, procedures and treatments can be sold and promoted to an unsuspecting public who can be swindled, or worse, harmed. When this happens, even procedures that may benefit our patients can get caught up in the fray. We need only look to the lay press to see how our profession can be sullied in ways that may seem unfair to us. Poorly investigated procedures and technology can harm our entire profession. What do we do when this misinformation reaches our patients? And they believe it because they read it somewhere? Or someone told them about it? And they come to us with their belief hardened? As Paine tells us, it is an almost impossible task to undo what has been done. To be clear, no one person, political leaning, or socioeconomic class has a monopoly on misinformation. Today we have an example that is compelling, taking place in real time, literally as we sit here today. In perhaps what is the defining misinformation campaign of our times, the link between vaccines and autism. Measles was declared eradicated in the US in 2000 by the CDC and the Americas in 2016 by the Pan American and World Health Organizations thanks to widespread vaccinations. But just a few years later, the disease is making a resurgence due to a decline in vaccinations. Not because of some new untreatable strain or forces beyond our control, or a vaccine so expensive that no one can afford it. No, the resurgence is due to a decline in vaccinations. Parents simply choosing to not vaccinate. In Europe, the numbers are even worse with the continent experiencing nearly 100 000 reported cases. Measles is a terrible disease with a death rate as high as 30% prior to the vaccine. Even today, it has a case fatality rate of 3 in 1000. Nonmedical exemptions are becoming more common and are clearly causing a spike in measles outbreaks. These exemptions are occurring across the political spectrum in communities all over the United States. In my home state of Texas, the number of nonmedical exemptions has been rising dramatically, from just about 2000 in 2002 to over 64 000 in 2019. What has not been going down commensurate with this 30-fold increase in exemptions is the rate of autism. How did we get here? The link between measles, mumps, rubella and autism, stems from an article by Andrew Wakefield in 1998. This study of just 12 children concluded that the vaccine resulted in “developmental regression in a group of previously normal children”. The cause was taken up by celebrities and others resulting in a sustained attack against the safety of vaccines. We have watched the CDC and WHO and pediatric and infectious disease experts speak out with truth and science and reason—and yet too many parents listen to celebrities and anecdotes. The scientists promoting the safety and efficacy of these vaccines get demonized. We have watched truth and reason be trumped by hype, no matter how well intended it is. The effects of this paper linger even today, all over the world, with high rates of belief that vaccines cause autism. Twelve years later, The Lancet published a retraction indicating that “several elements” of the paper were “incorrect”. By then, the damage had been largely done. Now we are experiencing outbreaks all over the country with dangerous, even intentional, exposures of our children to diseases with not insignificant consequences, including death. Change is possible though. After a measles outbreak in Disneyland in 2015, the California legislature passed Senate Bill 227 which banned non-medical exemptions in 2016. This resulted in a record high vaccination rate of over 95% of kindergartners. Medical misinformation is making its way into our hospitals and clinics like never before. We need to push back. We are the experts, and we can make a difference. When we hear something absurd, we should not be afraid to call it out. We must use our expertise to inform patients and the public. Our voices can change minds. There is no risk-free proposition. We do have data on harm from vaccines. The National Vaccine Injury Compensation Program pays out adjudicated claims and collects data from individuals harmed by vaccines. Between 2006 and 2017, 3.4 billion doses of vaccines were distributed in the US. One individual was compensated for every 1 million doses distributed. By comparison, the likelihood of being struck by lightning is 1 in 700 000. This information is rarely, if ever, mentioned in the so-called vaccine debate. Perhaps the most famous example of the harm medical misinformation can cause is the choice Apple co-founder Steve Jobs made regarding his own cancer diagnosis. Jobs was diagnosed with a pancreatic neuroendocrine tumor at age 48. He was advised to undergo potentially curative surgery, but for 9 mo he sought out alternative treatments including vegan diets, acupuncture, cleansings, and even consulted a psychic. He eventually had the surgery but according to many experts this delay almost certainly cost him his life. My wife Lorelei was diagnosed with a similar tumor not so long ago. In 2010, after years of intermittent abdominal pain attributed to reflux, while suffering with severe pain, from what we now know was acute pancreatitis, she went, on her own, to a local emergency room and insisted on getting a computed tomography. It was a shock; she was too healthy to be that sick. We discovered her tumor when our twin boys were barely a year old. We were fortunate to have the best information on how to treat her tumor and after her distal pancreatectomy and splenectomy, she has made a remarkable recovery. I would not be standing here, not as president of the CNS, not as a neurosurgeon, but as the person I am today had it not been for the love and support of my wife. Her journey reminds me that medical science has made a remarkable difference in the lives of countless human beings. What would have happened to someone with a pancreatic tumor 100 yr ago, or even 50 yr ago without the advances that we now take for granted. We are celebrating cures of stage IV cancers even in patients with brain metastases thanks to the diligence and hard work of unsung heroes in laboratories and patients willing to enroll in clinical trials. We wait to hear results of prospective randomized controlled trials because they provide us the best evidence that a treatment is going to work. And the payoff is that our patients survive to live another day, spend time with their families, and enjoy life. We are in a unique position to advocate for our patients by advancing truth, confronting misinformation, and recommending the best treatments, but also by avoiding those that do not work or have not demonstrated efficacy in a rigorous way. We should not be afraid to advise a patient that an “alternative treatment” may expose them to real harm. Choosing “alternative” medicine over standard of care therapies can lead to a significant decrease in survival for patients with cancer. Now I ask—what can we do, each of us? I want you to leave here ready to help our patients by doing something, and each of us will choose our own way. Doing something can take many forms. It is an uphill battle for sure. You will be facing the so-called Dunning-Kruger Effect in which overconfidence and a knowledge deficit go hand in hand. I had the opportunity to meet with Dr Peter Hotez, Dean for the National School of Tropical Medicine at Baylor College of Medicine, and a champion of vaccinations, he told me we need a curriculum that specifically teaches health and science verbal communication in our medical schools. We need to teach the tools to defend science and expertise. We need to speak in declarative sentences and avoid talking down to our patients. He titled his book “Vaccines Did Not Cause Rachel's Autism” in order to simplify the message. I encourage you to read this book, but do not look at the book reviews; they’ve been corrupted by the anti-vaccination movement. “The mind once enlightened cannot again become dark” To conclude, I want to encourage you to counter misinformation and dangerous recommendations in the following ways: We must all stay abreast of the latest and best studies in our field. Familiarize yourselves with ways to differentiate good studies from bad. When patients ask you about a treatment you know to be ineffective or dangerous, it is your opportunity to help that patient Check your arrogance though, our patients deserve honesty, as well as humility and respect Participate in honest and open Morbidity and mortality conferences, Review practice changing peer-reviewed literature with colleagues If misinformation is being spread—say something. We have to be actively engaged. We are the experts. Be critical, be skeptical, but remain open to changing your mind if the evidence convinces you to do so. This is what I am asking. That we are even more forceful in being the guardians of medical truth with our patients and with our communities. To quote Paine one last time: “The mind once enlightened cannot again become dark” Disclosures The author has no personal, financial, or institutional interest in any of the drugs, materials, or devices described in this article.