ISPP 2015

Career Opportunities in Pharmacy
Impersonalized Nature of Precision Medicine | Neil Spector | TEDxNashville



this statement from William Osler 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 and probabilities and eliminating uncertainty has been a major focus of biomedical research and 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 and the clinical wherewithal the art of medicine seems to be a vanishing art so imagine for a moment a clinician I use clinician because it's not just MDS it's nurse practitioner practicing errs and physician's assistants imagine a clinician as an artist with a palette filled with beautiful colors each 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 crossroad between test oriented precision medicine as defined here by the NIH website and the tradition of the Horta Medicine and the path we all of humanity chooses will have monumental consequences not only on the quality of the health care we receive but on the quality of the life we live so 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 now trust me what I'm about to tell you could easily happen to you or a loved one who perhaps already has so let me tell you what happened to me and 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 I've been a cancer researcher for the same amount of time for last nine at Duke University I've been incredibly fortunate to have used cutting-edge science to develop to molecularly targeted cancer drugs both of which are fda-approved I think I you know 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 of health could go from looking like this to looking like that in a relatively short period of time now so understand that transition let me take you back to where the journey began I loved Harvard's dana-farber Cancer Research Institute after a number of years primarily because my wife was tired of lousy weather and took a job and a new career at the University of Miami School of Medicine and within weeks of moving to Miami I started developing palpitations so if a normal heart rate the average is about 70 beats per minute my heart rate would suddenly start racing upwards of 180 beats per minute for no reason what's the and those episodes would last 30 seconds to a minute and they were terrifying and I had lots and lots of skip beats on a fairly regular basis and if that wasn't bad enough several weeks after the palpitation started while driving down i-95 in Miami and you may know what that's like under the best of circumstances 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 profuse sweating all the classic signs of a heart attack right and I had this unbelievable sense that I was about to die so much so that I said my goodbyes to my wife he was sitting next to me a few weeks after that I developed 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 ten 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 just 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 and there were many of them came the same reassurance Neal your lab tests looked normal the routine tests the autoimmune tests we can't figure out what's wrong with you we think your problem is you're stressed that probably sounds familiar right and I knew I wasn't stressed I mean 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 and so I urged my doctors to look on look beyond the test solve this puzzle and after four tumultuous years of just physical and emotional despair and completely frustrated by the fact that I had been typecast as being stressed when I knew something was wrong the answer finally became clearer at least it became clear to me so let me just walk you through the events that led to that aha moment I developed out to four years they persistently slow heart rate about 40 beats a minute and I was diagnosed with third-degree heart block the most severe and life-threatening electrical disturbance of the hearts wiring system that regulates the heartbeat that each of us takes for granted and it was also at that time that a monitor captured one of the episodes of palpitations that I'd 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 and I also developed arthritis so severe that I could barely lift my arms and hold utensils now 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 a hundred percent and that's really when the lightbulb clicked on anyone have any guesses as to what I had I was convinced I put the pieces together and it wasn't sort of high-tech technology I just thought about the symptoms brain fog unexplained cardiac manifestations extremely fatigued 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 and so we sent the labs off and I was shocked several days later when my cardiologist called me and said Neal your lab test is negative for Lyme disease now in retrospect that test was not entirely negative and so rather than get it the antibiotics that I desperately needed I instead had a permanent pace maker defibrillator implanted in my chest and I was given a diagnosis of idiopathic electrical problems in your heart now for those of you who don't know what idiopathic means it essentially means you've got a disease for which we don't know the underlying cause but as a good friend of mine recently reminded me idiopathic stands for idiot doctor pathetic patient right yeah idiopathic don't do well when he Titan and so I had to advocate for myself I had to force my doctors to repeat that test several times and over the ensuing months the test finally came back confirming lyme disease and i was treated with aggressive antibiotic therapy and a lot of my symptoms improved but sadly the damage to my heart was irreversible and 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 productive life developing those two drugs with only 10% heart function so I what was even more impressive was I coach my daughter's soccer teams for several yards and I got shocked many times along the way let me tell you now let me get back to the question of how did this happen to me the penultimate Medical Insider and just imagine if that happened to me what's happening to you the reason was is because doctors today are so addicted to tests that they've forgotten to utilize their clinical skills and these tests are often pretty lousy right the more I learned for example 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 that's not a very good test and clinicians order lots of tests and often they know very little a bit the tests how is the test developed what's the false positive false negative rate and results are not always black and white there's lots of gray as in my case and when there's gray that's where clinical skills and judgement which sadly are vanishing are important now I'm not advocating the tests are useful I mean I use them all the time you know if you want to know if you're pregnant you get a pregnancy test but what we've forgotten and studies have shown is it taking a thorough history and a complete physical exam leads to an accurate diagnosis seventy to ninety percent of the time but who's got the time to do that in this day and age the average clinic visit in the u.s. is fifteen to nineteen minutes you go to clinic it's like speed dating although I've never actually done that and a very interesting study showed that on average patients are interrupted by their clinician and redirected in the discussion after only 12 seconds now this is a Rick this is all a recipe for disaster right there are very complicated patients with multiple chronic medical conditions taking lots of medicines looking for medical help the lack of time to adequately communicate with patients and in attentiveness to detail is a contributing factor frankly in the four hundred and forty thousand deaths that occur in the u.s. each year for medical errors that's a tragedy brings me to the next Osler quote I love those lawyers you could tell the good physician treats the disease the great physician treats the patient who has the disease based on this definition there's probably lots of good clinicians out there I mean 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 and the great clinicians not only use the art of medicine to take care of their patients but they use the tools of precision medicine and I think nowhere is that better exemplified than in oncology so for example an area my specialty for us cancer we used to consider breast cancer 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 in genomics we've been able to identify multiple subtypes of breast cancer and we've been able to use that information to develop drugs targeting specific mutations and those subtypes and that's transformed outcomes and we've been able to do that for leukemias for sarcomas for certain types of lung cancer to develop exquisitely targeted drugs and drugs that unleash the power of the immune system I mean we have within our grasp now the ability to cure cancers that I never would have thought imaginable 25 years ago as a fledgling oncologist at Harvard so has precision medicine changed the way we practice the answer is yes in oncology but sadly no for most other diseases and even the best precision medicine tool is of no value unless patients change their behaviors and are compliant with treatment and 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 percent feel like they were involved in the decision making process that's not empowering patients and in fact it often seems like clinicians have this omnipotent power about them which reminds me of a story about a doctor who dies and goes to heaven and he's very busy on earth and there's a long line to get into the pearly gates and he just can't wait so he goes to the front of the line says to the angel I'm a busy doctor I can't wait in this line and the angel looks and says you know what this is heaven there's no preference for doctors go back and wait so he goes back his way all the sudden out of the corner of the eye flies by this doctor with a white coat stethoscope around the neck goes right to the front the gates open 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 and the angel looks and says that was no doctor that was just God playing doctor again so anyway you know empowering patients makes a difference I really recall a woman who came to see me for a bone-marrow transplant with her hematologic malignancy and she told me at the first visit you know what I'm gonna have to get up and leave the minute the minute you use the word cancer or say anything bad so needless to say shortly after the visit she got up and left and I spent the rest of the time with her family now all the science and evidence-based medicine I knew it it 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 and so I spent a great deal of time literally nights 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 yet 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 her husband like almost fell off the floor laughing but you know what when the time came for the transplant she went through with flying colors and it wasn't science or precision medicine that got her through was the art of Medicine and the irreplaceable bond between the clinician and the patient now contrast up thank you contrast that to those who say that 80% of what clinicians do will be replaced by computers and there's no question that complete computers play an important role in this era of big databases I mean millions and millions of people around the globe are collecting urine and 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 where computers can't do is gauge emotional distress at patients experience and we know that emotional distress adversely affects health so for example emotional distress impairs wound healing and increases the risk of dying and hard patients would a computer have gauged the emotional the sheer terror that I experienced getting shocked in front of my family not knowing whether I would die right then and there from a fatal arrhythmia were 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 so I end with Osler once again we as clinicians and patients need to set sail together on charted waters to make transformative discoveries that change all of humanity and I would be incredibly remiss if I didn't mention the fact that April is donor awareness month and I certainly wouldn't be standing here on stage had it not been family who thought of others in their desperate moment so thank you

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