Strategic Advisor, Verisk Analytics, Inc
Impersonalized Nature of Precision Medicine | Neil Spector | TEDxNashville
Imagine that Personalized Medicine is anything but personal, where healthcare is delivered according to apps and algorithms, relegating the Art of Medicine obsolete. Dr. Spector remains a strong proponent of Personalized Medicine but not at the expense of losing the valued practice of medicine as an art rather than an exact science.
Dr. Neil Spector is the author of “Gone in a Heartbeat: A Physician’s Search for True Healing.” Neil Spector, MD, is also the Sandra Coates Associate Professor of Medicine, and Associate Professor of Pharmacology and Cancer Biology at Duke University School of Med...
About Neil Spector
Neil Spector, a strategic advisor at Verisk Analytics and an oncologist, has spoken publicly about his experience with Lyme disease and his views on the medical community's approach to the illness. In a 2016 interview, Spector stated that the medical community has "failed patients" with Lyme disease, attributing this to a "dogmatic approach" that influences how doctors treat patients. He noted that after four years of being told he was stressed, he was diagnosed with Lyme disease and treated with antibiotics, but the damage to his heart was permanent. Spector also criticized Lyme disease testing, calling it "lousy" and stating that a negative test does not always mean a patient does not have the disease. He argued that the perception that Lyme disease is "easy to diagnose and easy to treat" has affected funding and priorities. In a separate 2016 TEDx talk, Spector discussed the tension between precision medicine and the art of medicine. He argued that doctors have become "so addicted to tests that they've forgotten to utilize their clinical skills," and that a thorough history and physical exam can lead to an accurate diagnosis 70 to 90 percent of the time. Spector stated that the average clinic visit in the US is 15 to 19 minutes and that patients are often interrupted after 12 seconds, which he said contributes to medical errors. He advocated for a healthcare system that allows physicians to practice both the art of medicine and precision medicine, rather than viewing them as a false dichotomy.
Transcript (20 segments)
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Neil Spector0:10
The father of modern medicine is as relevant today as it was at the turn of the 20th century when it was said: living with a serious medical illness is distressing and stressful enough without the understanding that the balance between your life and your death hangs on uncertainties, probabilities. And eliminating uncertainty has been a major focus of biomedical research. Despite incredible advances, including the identification of the 20,000 genes in the human genome, essentially our DNA footprint, uncertainty persists. And sadly, the expertise, the clinical wherewithal, the art of medicine seems to be vanishing.
Color representing a source of information about that individual: listening to patients, observation and physical examination, factors such as family history, lifestyle behaviors, environmental exposure, travel, socioeconomic conditions, and laboratory results all go into filling out a blank canvas and creating a beautiful portrait of that individual that tells their story. That's the art of medicine. Now we face a crossroads between test-oriented precision medicine, as defined here by the NIH.
Let me tell you a true story that really encapsulates the dilemma that all of us should be concerned about. Six years ago, at the age of 53, I came within 72 hours of dying from a disease that should have been diagnosed and treated when my symptoms first surfaced at the age of 37. Trust me, what I'm about to tell you could easily happen to you or a loved one, and perhaps already has. So let me tell you what happened to me, how it happened, and how it could have been avoided. I've been an oncologist for 25 years. I've utilized the best of the art of medicine, I've utilized the tools of precision medicine to take care of my patients.
All of which are FDA approved. Oh, thank you. I lived an incredibly healthy life. I ran marathons, I never smoked, I had no family history, I tried to eat healthy. And yet you wonder how somebody like me, a medical insider who was really the paradigm of health, could go from looking like this to looking like that in a relatively short period of time. Now to understand that transition, let me take you back to where the journey began. I left Harvard's Dana-Farber Cancer Research Institute after a number of years.
So if a normal heart rate averages about 70 beats per minute, my heart rate would suddenly start racing upwards of 180 beats per minute for no reason whatsoever. Those episodes would last 30 seconds to a minute, and they were terrifying. I had lots and lots of skip beats on a fairly regular basis. And if that wasn't bad enough, several weeks after the palpitations started, while driving down I-95 in Miami, I felt this incredible pressure on my chest, like an elephant sitting on my chest, the pain radiating up into my jaws, down my left arm, nausea.
Brain fog, as if I were taking 30 Benadryl tablets every few hours, and that lasted a few weeks. I gave a lecture once on the research that we were doing and walked out of the lecture hall and had no recollection of what I had just spent an hour talking about. And the fatigue, the fatigue was incredible, it was debilitating. I went from running 10 miles a day, six days a week when I was in Boston, to barely being able to walk 20 yards without having to stop because of a complete lack of energy. I knew I was dying from some systemic illness, I just didn't know at that time what it was.
And with every ER and clinic visit, I was told I was stressed. And I knew I wasn't stressed. I had worked 120 hours a week in the intensive care unit as a medicine resident at Parkland Hospital in Dallas. That was real stress, and I never experienced anything like what I was experiencing. So I urged my doctors to look beyond the test, solve this puzzle. After four tumultuous years of physical and emotional despair, completely frustrated by the fact that I had been typecast as being stressed when I knew something was wrong, the answer finally became clear, at least it became clear to me. So let me walk you through the events that led to that aha moment.
The heart's electrical system regulates the heartbeat that each of us takes for granted. It was also at that time that a monitor captured one of the episodes of palpitations that I had had over the preceding four years, hundreds of them, that turned out to be ventricular tachycardia, a potentially life-threatening arrhythmia that could have easily killed me on any number of occasions during those four years. I also developed arthritis so severe that I could barely lift my arms and hold utensils. It was rather fortuitous that I was prescribed an antibiotic for a completely independent reason, and within 24 hours of starting the antibiotic, the arthritis resolved 100%. And that's really when the light bulb went off.
Extreme fatigue, to put it mildly, and arthritis that resolved with doxycycline, the drug of choice for Lyme disease. I was convinced I had Lyme disease. I had lived in an endemic area in New England. So we sent the labs off, and I was shocked several days later when my cardiologist called me and said, 'Neil, your lab test is negative for Lyme disease.' Now in retrospect, that test was not entirely negative. So rather than getting the antibiotics that I desperately needed, I instead had a permanent pacemaker-defibrillator implanted in my chest and I was given a diagnosis of idiopathic electrical disease.
Idiopathic stands for 'idiot doctor, pathetic patient,' right? Yeah, idiopathic doesn't do well, let me tell you that. So I had to advocate for myself. I had to force my doctors to repeat that test several times. Over the ensuing months, the test finally came back confirming Lyme disease, and I was treated with aggressive antibiotic therapy. A lot of my symptoms improved, but sadly the damage to my heart was irreversible. As I write about in my book 'Gone in a Heartbeat,' I lived the next 12 years with a severely damaged heart, with the Sword of Damocles hanging over my head that I could die at any minute, actually living a fairly normal life.
Let me get back to the question of how did this happen to me, the penultimate medical insider? Just imagine if that happened to me, what's happening to you? The reason was because doctors today are so addicted to tests that they've forgotten to utilize their clinical skills. And these tests are often pretty lousy. The more I learned about Lyme disease testing then, and sadly now, the more I realized how flawed the test was. In fact, the state of Virginia passed a bill requiring clinicians to inform patients that a negative test does not mean they don't have the disease, that it's not a very good test. Clinicians order lots of tests, and often they know very little about them.
Clinical skills and judgment, which sadly are vanishing, are important. Now I'm not advocating that tests aren't useful. I use them all the time. If you want to know if you're pregnant, you get a pregnancy test. But what we've forgotten, and studies have shown, is that taking a thorough history and a complete physical exam leads to an accurate diagnosis 70 to 90% of the time. But who has the time to do that in this day and age? The average clinic visit in the US is 15 to 19 minutes. You go to clinic, it's like speed dating, although I've never actually done that. A very interesting study showed that on average, patients are interrupted by their clinician within 11 seconds of starting to tell their story.
The lack of time to adequately communicate with patients and inattentiveness to detail is a contributing factor in the 440,000 deaths that occur in the US each year from medical errors. That's a tragedy. That brings me to the next Osler quote I love. Osler said, 'The good physician treats the disease; the great physician treats the patient who has the disease.' Based on this definition, there are probably lots of good clinicians out there. After all, you can order lots of tests and prescribe enough medicines that you look pretty good. But what's sadly lacking are the great clinicians. The great clinicians not only use the art of medicine to take care of patients, but they also use the tools of precision medicine.
Consider breast cancer. We used to consider breast cancer a homogeneous disease and treated it according to a one-size-fits-all mentality. Lots of people, men and women, were exposed to highly toxic drugs without any benefit. In the era of precision medicine and genomics, we've been able to identify multiple subtypes of breast cancer and use that information to develop drugs targeting specific mutations in those subtypes. That's transformed outcomes. We've been able to do that for leukemia, for sarcomas, for certain types of lung cancer, to develop exquisitely targeted drugs and drugs that unleash the power of the immune system.
Has precision medicine changed the way we practice? The answer is yes in oncology, but sadly no for most other diseases. Even the best precision medicine tool is of no value unless patients change their behaviors and are compliant with treatment. We know from study after study that patients who feel empowered and part of the decision-making process are more compliant and have better clinical outcomes. But sadly, 50% of patients leave a doctor's office not understanding what they were told, and only 10% feel like they were involved in the decision-making process. That's not empowering patients. In fact, it often seems like clinicians have this omnipotent power about them.
A busy doctor says, 'I can't wait in this line.' The angel looks and says, 'This is heaven, there's no preference for doctors, go back and wait.' So he goes back, he's waiting. All of a sudden, out of the corner of his eye, a doctor with a white coat, stethoscope around the neck, flies by, goes right to the front, the gates open, the doctor goes right in. Finally, this doctor gets to the gates and says to the angel, 'I thought there was no preference here in heaven for doctors.' The angel looks and says, 'That was no doctor, that was just God playing doctor again.' So anyway, empowering patients makes a difference. I vividly recall a woman who came to see me for a bone marrow transplant with her husband.
Her family was there. Now all the science and evidence-based medicine I knew said that she needed a transplant, that was her best shot at long-term remission. But there was no way in the world that woman was going to get through a transplant in that state of mind. There were life-threatening potential side effects of transplant that she needed to know about and accept. So I spent a great deal of time, literally nights and weekends, developing a relationship with her, laughing, crying. I remember once I was trying to crack a joke in Yiddish, and I didn't understand Yiddish, but anyway I wanted to say to her, 'I had a really good night last night,' and instead the translation came out, 'I think I just peed in my pants.' So she and her husband almost fell off the floor laughing. But you know what? When the time came for the transplant, she was ready.
You contrast that to those who say that 80% of what clinicians do will be replaced by computers. There's no question that computers play an important role in this era of big databases. Millions and millions of people around the globe are collecting urine, blood, and tumors for analysis, and are inputting their medical records into databases and onto the cloud. That astronomical amount of information cannot be comprehended by the human brain alone, but a computer can do that. But what computers can't do is gauge the emotional distress that patients experience. We know that emotional distress affects clinical outcomes.
I stood in front of my family not knowing whether I would die right then and there from a fatal arrhythmia, or the incredible emotional distress that I experienced writing a goodbye letter to my then 11-year-old daughter as my organs shut down one by one in need of a transplant. So I come back to the decision we face: precision medicine or the art of medicine? We don't need to make a decision based on a false dichotomy. We can have a healthcare system where physicians are allowed to practice the best of the art of medicine and precision medicine. But that's going to take more than a 15-minute visit. It's going to require physicians to be allowed to empower patients to have better outcomes.
That can change all of humanity. And I would be incredibly remiss if I didn't mention the fact that April is Donor Awareness Month. I certainly wouldn't be standing here on stage had it not been for a family who thought of others in their desperate moment. So thank you.