Why curiosity is the key to science and medicine | Kevin B. Jones

72,284 views ・ 2017-01-11

TED


Please double-click on the English subtitles below to play the video.

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Translator: Joseph Geni Reviewer: Joanna Pietrulewicz
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Science.
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The very word for many of you conjures unhappy memories of boredom
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in high school biology or physics class.
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But let me assure that what you did there
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had very little to do with science.
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That was really the "what" of science.
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It was the history of what other people had discovered.
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What I'm most interested in as a scientist
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is the "how" of science.
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Because science is knowledge in process.
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We make an observation, guess an explanation for that observation,
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and then make a prediction that we can test
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with an experiment or other observation.
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A couple of examples.
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First of all, people noticed that the Earth was below, the sky above,
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and both the Sun and the Moon seemed to go around them.
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Their guessed explanation
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was that the Earth must be the center of the universe.
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The prediction: everything should circle around the Earth.
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This was first really tested
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when Galileo got his hands on one of the first telescopes,
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and as he gazed into the night sky,
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what he found there was a planet, Jupiter,
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with four moons circling around it.
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He then used those moons to follow the path of Jupiter
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and found that Jupiter also was not going around the Earth
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but around the Sun.
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So the prediction test failed.
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And this led to the discarding of the theory
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that the Earth was the center of the universe.
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Another example: Sir Isaac Newton noticed that things fall to the Earth.
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The guessed explanation was gravity,
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the prediction that everything should fall to the Earth.
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But of course, not everything does fall to the Earth.
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So did we discard gravity?
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No. We revised the theory and said, gravity pulls things to the Earth
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unless there is an equal and opposite force in the other direction.
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This led us to learn something new.
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We began to pay more attention to the bird and the bird's wings,
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and just think of all the discoveries
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that have flown from that line of thinking.
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So the test failures, the exceptions, the outliers
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teach us what we don't know and lead us to something new.
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This is how science moves forward. This is how science learns.
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Sometimes in the media, and even more rarely,
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but sometimes even scientists will say
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that something or other has been scientifically proven.
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But I hope that you understand that science never proves anything
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definitively forever.
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Hopefully science remains curious enough
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to look for
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and humble enough to recognize
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when we have found
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the next outlier,
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the next exception,
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which, like Jupiter's moons,
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teaches us what we don't actually know.
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We're going to change gears here for a second.
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The caduceus, or the symbol of medicine,
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means a lot of different things to different people,
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but most of our public discourse on medicine
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really turns it into an engineering problem.
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We have the hallways of Congress,
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and the boardrooms of insurance companies that try to figure out how to pay for it.
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The ethicists and epidemiologists
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try to figure out how best to distribute medicine,
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and the hospitals and physicians are absolutely obsessed
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with their protocols and checklists,
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trying to figure out how best to safely apply medicine.
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These are all good things.
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However, they also all assume
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at some level
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that the textbook of medicine is closed.
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We start to measure the quality of our health care
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by how quickly we can access it.
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It doesn't surprise me that in this climate,
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many of our institutions for the provision of health care
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start to look a heck of a lot like Jiffy Lube.
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(Laughter)
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The only problem is that when I graduated from medical school,
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I didn't get one of those little doohickeys
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that your mechanic has to plug into your car
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and find out exactly what's wrong with it,
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because the textbook of medicine
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is not closed.
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Medicine is science.
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Medicine is knowledge in process.
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We make an observation,
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we guess an explanation of that observation,
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and then we make a prediction that we can test.
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Now, the testing ground of most predictions in medicine
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is populations.
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And you may remember from those boring days in biology class
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that populations tend to distribute
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around a mean
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as a Gaussian or a normal curve.
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Therefore, in medicine,
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after we make a prediction from a guessed explanation,
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we test it in a population.
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That means that what we know in medicine,
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our knowledge and our know-how,
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comes from populations
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but extends only as far
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as the next outlier,
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the next exception,
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which, like Jupiter's moons,
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will teach us what we don't actually know.
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Now, I am a surgeon
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who looks after patients with sarcoma.
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Sarcoma is a very rare form of cancer.
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It's the cancer of flesh and bones.
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And I would tell you that every one of my patients is an outlier,
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is an exception.
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There is no surgery I have ever performed for a sarcoma patient
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that has ever been guided by a randomized controlled clinical trial,
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what we consider the best kind of population-based evidence in medicine.
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People talk about thinking outside the box,
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but we don't even have a box in sarcoma.
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What we do have as we take a bath in the uncertainty
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and unknowns and exceptions and outliers that surround us in sarcoma
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is easy access to what I think are those two most important values
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for any science:
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humility and curiosity.
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Because if I am humble and curious,
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when a patient asks me a question,
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and I don't know the answer,
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I'll ask a colleague
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who may have a similar albeit distinct patient with sarcoma.
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We'll even establish international collaborations.
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Those patients will start to talk to each other through chat rooms
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and support groups.
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It's through this kind of humbly curious communication
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that we begin to try and learn new things.
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As an example, this is a patient of mine
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who had a cancer near his knee.
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Because of humbly curious communication
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in international collaborations,
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we have learned that we can repurpose the ankle to serve as the knee
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when we have to remove the knee with the cancer.
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He can then wear a prosthetic and run and jump and play.
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This opportunity was available to him
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because of international collaborations.
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It was desirable to him
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because he had contacted other patients who had experienced it.
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And so exceptions and outliers in medicine
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teach us what we don't know, but also lead us to new thinking.
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Now, very importantly,
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all the new thinking that outliers and exceptions lead us to in medicine
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does not only apply to the outliers and exceptions.
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It is not that we only learn from sarcoma patients
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ways to manage sarcoma patients.
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Sometimes, the outliers
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and the exceptions
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teach us things that matter quite a lot to the general population.
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Like a tree standing outside a forest,
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the outliers and the exceptions draw our attention
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and lead us into a much greater sense of perhaps what a tree is.
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We often talk about losing the forests for the trees,
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but one also loses a tree
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within a forest.
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But the tree that stands out by itself
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makes those relationships that define a tree,
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the relationships between trunk and roots and branches,
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much more apparent.
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Even if that tree is crooked
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or even if that tree has very unusual relationships
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between trunk and roots and branches,
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it nonetheless draws our attention
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and allows us to make observations
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that we can then test in the general population.
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I told you that sarcomas are rare.
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They make up about one percent of all cancers.
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You also probably know that cancer is considered a genetic disease.
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By genetic disease we mean that cancer is caused by oncogenes
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that are turned on in cancer
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and tumor suppressor genes that are turned off to cause cancer.
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You might think that we learned about oncogenes
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and tumor suppressor genes from common cancers
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like breast cancer and prostate cancer
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and lung cancer,
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but you'd be wrong.
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We learned about oncogenes and tumor suppressor genes
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for the first time
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in that itty-bitty little one percent of cancers called sarcoma.
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In 1966, Peyton Rous got the Nobel Prize
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for realizing that chickens
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had a transmissible form of sarcoma.
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Thirty years later, Harold Varmus and Mike Bishop discovered
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what that transmissible element was.
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It was a virus
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carrying a gene,
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the src oncogene.
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Now, I will not tell you that src is the most important oncogene.
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I will not tell you
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that src is the most frequently turned on oncogene in all of cancer.
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But it was the first oncogene.
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The exception, the outlier
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drew our attention and led us to something
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that taught us very important things about the rest of biology.
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Now, TP53 is the most important tumor suppressor gene.
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It is the most frequently turned off tumor suppressor gene
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in almost every kind of cancer.
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But we didn't learn about it from common cancers.
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We learned about it when doctors Li and Fraumeni
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were looking at families,
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and they realized that these families
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had way too many sarcomas.
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I told you that sarcoma is rare.
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Remember that a one in a million diagnosis,
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if it happens twice in one family,
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is way too common in that family.
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The very fact that these are rare
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draws our attention
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and leads us to new kinds of thinking.
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Now, many of you may say,
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and may rightly say,
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that yeah, Kevin, that's great,
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but you're not talking about a bird's wing.
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You're not talking about moons floating around some planet Jupiter.
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This is a person.
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This outlier, this exception, may lead to the advancement of science,
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but this is a person.
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And all I can say
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is that I know that all too well.
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I have conversations with these patients with rare and deadly diseases.
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I write about these conversations.
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These conversations are terribly fraught.
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They're fraught with horrible phrases
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like "I have bad news" or "There's nothing more we can do."
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Sometimes these conversations turn on a single word:
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"terminal."
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Silence can also be rather uncomfortable.
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Where the blanks are in medicine
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can be just as important
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as the words that we use in these conversations.
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What are the unknowns?
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What are the experiments that are being done?
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Do this little exercise with me.
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Up there on the screen, you see this phrase, "no where."
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Notice where the blank is.
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If we move that blank one space over
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"no where"
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becomes "now here,"
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the exact opposite meaning,
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just by shifting the blank one space over.
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I'll never forget the night
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that I walked into one of my patients' rooms.
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I had been operating long that day
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but I still wanted to come and see him.
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He was a boy I had diagnosed with a bone cancer a few days before.
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He and his mother had been meeting with the chemotherapy doctors
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earlier that day,
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and he had been admitted to the hospital to begin chemotherapy.
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It was almost midnight when I got to his room.
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He was asleep, but I found his mother
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reading by flashlight
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next to his bed.
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She came out in the hall to chat with me for a few minutes.
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It turned out that what she had been reading
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was the protocol that the chemotherapy doctors
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had given her that day.
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She had memorized it.
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She said, "Dr. Jones, you told me
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that we don't always win
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with this type of cancer,
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but I've been studying this protocol, and I think I can do it.
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I think I can comply with these very difficult treatments.
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I'm going to quit my job. I'm going to move in with my parents.
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I'm going to keep my baby safe."
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I didn't tell her.
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I didn't stop to correct her thinking.
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She was trusting in a protocol
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that even if complied with,
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wouldn't necessarily save her son.
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I didn't tell her.
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I didn't fill in that blank.
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But a year and a half later
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her boy nonetheless died of his cancer.
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Should I have told her?
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Now, many of you may say, "So what?
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I don't have sarcoma.
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No one in my family has sarcoma.
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And this is all fine and well,
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but it probably doesn't matter in my life."
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And you're probably right.
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Sarcoma may not matter a whole lot in your life.
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But where the blanks are in medicine
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does matter in your life.
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I didn't tell you one dirty little secret.
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I told you that in medicine, we test predictions in populations,
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but I didn't tell you,
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and so often medicine never tells you
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that every time an individual
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encounters medicine,
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even if that individual is firmly embedded in the general population,
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neither the individual nor the physician knows
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where in that population the individual will land.
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Therefore, every encounter with medicine
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is an experiment.
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You will be a subject
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in an experiment.
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And the outcome will be either a better or a worse result for you.
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As long as medicine works well,
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we're fine with fast service,
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bravado, brimmingly confident conversations.
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14:29
But when things don't work well,
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sometimes we want something different.
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A colleague of mine removed a tumor from a patient's limb.
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He was concerned about this tumor.
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In our physician conferences, he talked about his concern
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that this was a type of tumor
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that had a high risk for coming back in the same limb.
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But his conversations with the patient
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were exactly what a patient might want:
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brimming with confidence.
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He said, "I got it all and you're good to go."
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She and her husband were thrilled.
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They went out, celebrated, fancy dinner, opened a bottle of champagne.
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The only problem was a few weeks later,
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she started to notice another nodule in the same area.
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It turned out he hadn't gotten it all, and she wasn't good to go.
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But what happened at this juncture absolutely fascinates me.
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My colleague came to me and said,
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"Kevin, would you mind looking after this patient for me?"
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I said, "Why, you know the right thing to do as well as I do.
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You haven't done anything wrong."
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He said, "Please, just look after this patient for me."
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He was embarrassed --
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not by what he had done,
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but by the conversation that he had had,
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by the overconfidence.
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So I performed a much more invasive surgery
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and had a very different conversation with the patient afterwards.
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I said, "Most likely I've gotten it all
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and you're most likely good to go,
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but this is the experiment that we're doing.
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This is what you're going to watch for.
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This is what I'm going to watch for.
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And we're going to work together to find out if this surgery will work
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to get rid of your cancer."
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I can guarantee you, she and her husband
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did not crack another bottle of champagne after talking to me.
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But she was now a scientist,
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not only a subject in her experiment.
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And so I encourage you
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to seek humility and curiosity
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in your physicians.
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Almost 20 billion times each year,
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a person walks into a doctor's office,
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and that person becomes a patient.
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You or someone you love will be that patient sometime very soon.
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How will you talk to your doctors?
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What will you tell them?
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What will they tell you?
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They cannot tell you
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what they do not know,
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but they can tell you when they don't know
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if only you'll ask.
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So please, join the conversation.
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Thank you.
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(Applause)
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