Two high-tech detectives, Larry Smarr and Batman. (Erik Jepsen/UC San Diego; Warner Bros. Interactive / Rocksteady

How To Find A Cure

What would Batman do? Larry Smarr, the most tech-savvy detective in medicine, charts a path for patients.

I’ve been thinking about this question for over 18-years, since my son Sam was diagnosed with incurable heart defects. I’m certainly not alone. Although we’re often segmented into tiny populations, a remarkably high number of people live with chronic conditions.

These conditions slowly and relentlessly take control of our lives. This is a story about how to take that control back.

Our larger-than-life hero is Larry Smarr. He’s a pioneer in the quantified self movement and among the most measured people on the planet. Larry measures a remarkable range of biological markers, from his DNA to his droppings. He’s also an extraordinarily engaged patient. As Mark Bowden reported back in 2012, “Larry is on a mission. He’s out to change the world and, along the way, defeat at least one incurable disease: his own.”

By day, Larry’s a scientist, an astrophysicist by training, now immersed in biomedical research. He’s the founding director, now retired, of the California Institute for Telecommunications and Information Technology (Calit2), a $400 million academic research institution.

Calit2 and Wayne Enterprises. (UCSD/UCI; Warner Bros.)

By night, Larry is Batman, or at least a reasonable likeness. He’s a disease-fighting detective. In an article introducing his project in 2011, Larry highlighted the nature of his work. “In many ways, my personal journey is a detective story.”

Quantification and technology are his gadgets. It’s the sort of mind-blowing stuff you only see in the movies. While most of us struggle to figure out our Fitbits, Larry wields data in supercomputers and virtual reality caves. He creates detailed mathematical models and 3D visualizations of his insides.

And when necessary, Larry deploys these tools to run roughshod over those traditionally charged with finding cures.

It’s easy to lose Larry underneath all that tech and harder still to find ourselves in Larry’s example. Stories of superheroes and supercomputers, detectives of superior intellect and character are works of fiction, beyond the reality of everyday people. When your daily existence is merely survival, fables and false hopes are the last thing you need.

“What would Batman do?” — Sam Sweeney, high school yearbook, 2020

But if we strip away the gadgets, the supercomputer and the cave, is Bruce Wayne still Batman? Is Larry still Larry?

Of course they are! And all the more comprehensible for it. Only by getting behind the sensational headlines, beyond all that tech and data, can we see clearly what Larry’s really up to, what truly matters in his search for a cure.

I have to warn you, though, there’s also a dark side to this story. For some, Larry is the Dark Knight of the quantification movement. We need to understand this part of his story, too.

But like all tales of heroism, Larry’s story contains more truth than you may be comfortable carrying. In the final analysis, the moral of this story is that the search for a cure is not as exceptional as it might seem. And it calls all of us.

So pick your strategy and let’s get started.

Part I: Pick Your Strategy

If you’re searching for something, it helps to have a search strategy. Why bother starting unless you have a good reason to expect your search will be fruitful.

Let’s consider the strategy most people adopt: wait for a cure to find you.

Wait for it

This was my strategy initially. When my son was born, I took comfort in the knowledge that many people like him outlived the innovations that made his survival possible. Patients like Sam are living experiments and so the future was open. While not a cure, treatments bought precious time. And in time (so the strategy goes) medicine may be expected to make continued and predictable progress.

Over the intervening years, several developments cooled my enthusiasm for this strategy. One is fatigue. Like trying to outrun a tsunami, running against time is hardly empowering.

But the most significant development is what hasn’t happened. While there’s much to celebrate, personally and collectively, the overall arc of progress in medicine is more modest than people realize. Despite the deluge of headlines about scientific breakthroughs and revolutions, science moves slowly.

Unfortunately, time and patience are often luxuries the chronically ill cannot afford. If you wait for it, your cure may arrive too late.

Find a solution to emulate

Best-selling authors Chip and Dan Heath suggest an alternative approachFind a solution to emulate. If we can find people who have found success, in spite of all these problems, perhaps they’re onto something. The Heath brothers call these the bright spots. It’s with this in mind that I offer Larry’s story.

Larry certainly believes he has something to emulate. He wrote, “Although I have described my own body, the methods are generally applicable to everyone.” In the Heath vernacular, Larry is charting a critical path for the rest of us to follow. Larry understands it as such: “My personal quest is just one of many early experiments to try to understand the future outlines of this digitally transformed world.”

Another chronic patient, the author Jon Cohen, penned an insightful portrait of Larry back in 2012. At the time, Cohen described himself as “a disease-weary skeptic,” but found in Larry grounds for optimism, but he remained guarded. Cohen wrote, Larry’s project “has all the pitfalls of any ‘n = 1’ experiment — a test in which only one person is the subject.”

You see, unless your circumstances are exactly like Larry’s (or any other success story you wish to follow), how do you know what to draw from his experience and what to reject?

Larry’s story isn’t a roadmap. It’s a precious example of progress in an otherwise murky sea of problems. We need to explain Larry’s example and precisely why it works.

I’ll close with this explanation. But to embrace it, we first need to adopt the right attitudes.

Part II: Get Your Head Right

The psychological toll of chronic illness is relentless. Many times, all we crave is a break from it all. But like the pull of sleep when you’re out in the cold, we need to resist complacency. We need to wake up. We need to learn how to say, in a stoic tone, I’m Batman.

These are the attitudes that power the search for a cure.

Personal responsibility

As Bowden reported, Larry offered a memorable calculus of the healthcare journey. He said, “you have 40 minutes a year that that doctor is going to help you make good decisions. You have 500,000 minutes a year on your own, and every one of those, you are making decisions.”

In light of that, is it reasonable for anyone other than you to ultimately be responsible for your care? Is there anyone more responsible for your body?

Larry finds absurd the notion that anyone but the patient is ultimately responsible. In a lecture at UC San Diego in 2012, he said “The idea that the doctor is going to fix you is ridiculous, just on the face of it.”

More recently, Larry adopted a business analogy to anchor the idea of personal responsibility, as his body’s CEO. It’s an important analogy, one that I unpacked in a previous article. Like a company without leadership, your healthcare is an orphan without you.

For others, personal responsibility is hard to accept. It was hard for Larry, too. He was initially reluctant to even accept his diagnosis. But he eventually embraced it. The Heath brothers maintain that most people are willing to take this personal responsibility, they’re just tired. “What looks like laziness is often exhaustion,” they explained.

But this feeling is only temporary. Once we understand the path forward, we get moving. And consistent habits are a big part of that.

Consistent habits

Fighting a chronic illness means constantly, continually, ceaselessly fighting. No wonder we’re weary! But Larry continues on, day after day, year after year. How does he do it?

The secret is, he doesn’t really. Just like Batman, Larry doesn’t spend all his time fighting disease. He spends much of his time tending to the tools he uses to solve problems.

In an interview with UCTV in 2018, Larry revealed that much of his effort is wrapped up in measurement and reporting. He maintains a daily diary of his symptoms. Just like a training regiment, Larry turns these behaviours into rituals. Over time, these activities become his normal routine.

The principle here isn’t about data and specific technologies, it’s about a quality of being observant. This is a critically important habit. A pen and a daily journal is a good start. Fitness trackers and wearables are increasingly affordable and powerful tools.

Larry finds energy not only in good habits but in novelty. We become weary when we’re fighting the same old battle, day in and day out. As we’ll see, many of Larry’s activities are characterized by the discovery of new information and new problems. Larry’s consistent behaviour is really a tapestry of activities, many of them delightful diversions from his disease.

Chronic conditions feel far less chronic when we’re not standing still. And they feel far less imposing when we consider the big picture.

Integrative thinking

Larry isn’t a doctor, he’s a scientist. He thinks in terms of integrated systems. Speaking to UCTV in 2018 alongside his osteopathic physician Michael Kurisu, Larry explained, “So much of what goes wrong in the body is a system change.” Larry believes this integrative approach will define the next generation of medicine.

But medicine isn’t organized this way. It’s highly specialized. If you’re suffering an undiagnosed or incurable condition, your path forward may span the boundaries of medical specialties, and even the boundaries of clinical medicine itself.

Larry respects no arbitrary boundaries in his search for a cure. What began as a personal investigation into weight loss and nutrition led him to the leading edge of the microbiome and precision medicine.

Our challenge is finding a way to navigate these murky waters responsibly.

And with that, we move into the most difficult mindset that detectives like Larry and Batman embrace: conventionality is not your ally. This is why Larry is that most exotic animal in the medical kingdom, the contrarian.

It’s why you need to become a contrarian, too.

A contrarian attitude

Nobody likes a contrarian. You want to take an oppositional stance on some issue? Fine. But to be a contrarian? To always and automatically stand in opposition to the popular opinion? That’s just annoying, right?

Not if you’re searching for a cure. If there’s anything to learn from Larry’s story, it’s this: You must be a medical contrarian. It’s not for some intrinsic weakness in medicine. Rather, you’re a contrarian because your condition is chronic, undiagnosed or incurable.

These things are connected. The search for a cure will drive you into uncharted territory. The attitudes and methods of science are your guide. And these attitudes are unusual in clinical medicine, particularly when wielded by patients.

The behaviours that are needed from you are not malicious, but they will draw contempt. These attitudes are not what doctors traditionally expect of patients. And so, Larry’s conflict with his doctors was assured. He wasn’t taken seriously at first. His project was dismissed as academic, the work of an amateur. People even thought he was a bit crazy.

Why did Larry endure it? “I knew I could drive the science,” he explained to Lawrence Fisher of Strategy+Business in 2017. Larry knew he had to take his care in a new direction and change often entails conflict.

As you’ll see, this contrarian stance will come to define not only your role, but the means by which you do your job. As circumstances dictate, Bruce Wayne transforms into Batman, and Nice Larry transforms into Contrarian Larry.

And so will you. But you won’t have to do it alone.

Part III: Find the Right Collaborators

Larry’s a personally responsible, consistently attentive, integratively thinking contrarian. But he’s no loner. Collaborators are vitally important to his mission. “You can’t predict the future, but if you’re going to create it, you have to be collaborative,” he told Fisher.

Sherlock Holmes has his Dr. Watson. Batman has his Robin. Who are Larry’s collaborators, and more importantly, how does he find them?

As in everything, Larry creates collaboration. He creates a space where collaboration flourishes.

That space begins with his own attitudes and behaviours. These are the expectations and high standards he holds for his collaborators. In a panel discussion with his surgeon Sonia Ramamoorthy, the participants drew special attention to this collaborative spirit. Larry described “a new sense of the empowered patient working with doctors and industry.”

High tech collaborators, Sonia Ramamoorthy and Robin. (UC San Diego; Warner Bros.)

Surprisingly, these collaborations began in a very familiar way, in a space inhabited by all patients.

Calling Dr. Google…

Dr. Google and the scientific literature

The first collaborator to Larry’s project was one you undoubtedly know well: the internet.

His motivation in the early days was his own education. In an interview with Bruce Bigelow for Xconomy in 2011, Larry said “When I want authoritative advice about medical issues I go to the Mayo Clinic, Cleveland Clinic, or the National Institutes of Medicine web sites. That gives me enough general knowledge that I am prepared to meet with my doctors and ask intelligent questions.”

When wielded properly, the literature is a valuable source of probing questions. While the literature is frustratingly unclear (even for doctors), it has an important role for patients: It provides them with a voice. And however partially or misinformed we may be, this provides a gateway for patients into the conversation.

By 2015, Larry had consumed more than 600 journal articles. He was no longer just an informed patient, he was a direct collaborator. Such are the proceeds of good consistent habits. Over time, patients may gain considerable and highly specialized expertise into their conditions. It won’t make you a doctor, but it will make you a better patient.

Larry eventually exhausted what individual resourcefulness can provide. While he amassed a great deal of data and expertise about his condition, he needed experts to help him interpret it all. He needed a surgeon to operate. He needed collaborators.

Sooner or later, Batman calls the police. Likewise, Larry needed to collaborate directly with doctors and researchers.

Doctors and researchers

We know Larry’s search for collaborators didn’t go smoothly at first. Contrarian Larry had to weather a good deal of righteous conflict.

While many patients go to their doctors with random printouts of articles from the internet, Larry presented a detailed presentation of his data. In a light moment from his TEDMED talk in 2013, Larry recalled, “If you think coming in with a pile of printouts from the web is an informed patient…I’m like the doctor’s worst nightmare.”

Unsurprisingly, he went through a lot of doctors. But all that information, intelligently packaged and attractively presented, was a big draw for the right collaborators.

Ramamoorthy agreed. She was captured by the novelty of Larry’s project and a patient who possessed such a detailed understanding of his body and the disease process. “How did he get all this stuff? I would love to have this for every single patient I take care of,” she said.

Larry knew that he had to find physicians willing to collaborate with patients on his terms. He’s the CEO. That’s his policy and the policy of every patient in search of a cure.

Other patients?

A major source of support for patients are other patients. Interestingly, these groups don’t figure prominently in Larry’s story. Patients are mentioned frequently, but they are discussed more as data and experimental subjects than collaborators.

Why is that? The main impediment for patients is the thing that makes Larry’s story so fascinating to begin with: It’s all about a brave new future.

In many aspects, Larry’s advocating a Wait for It strategy. Larry is proudly living “10 years in the future,” leveraging systems that are not generally available to the rest of us.

But for now? Larry cautions against it. Patients are identified as followers, not collaborators.

Finding a bridge to the future for the rest of us is no small challenge. This isn’t lost on Larry and his physician Michael Kurisu. Through Project Apollo, Kurisu is nurturing the development of more patients like Larry. Initially Kurisu called these collaborators, the Little Larrys. They are focusing on the data collection aspects, with an emphasis on integrative thinking and systems medicine.

But as we’ve seen, it’s very difficult to scale up an example, to generalize from all the aspects that could explain Larry’s success to those that actually do. Larry’s a detective, a scientist, a patient, a leader, an advocate, to name but a few of his roles. Which of these are we supposed to emulate, exactly? All of them?

This is what Cohen meant by the trappings of n=1 experiments. This is what the Heath brothers meant when they said to guard against practices that are exceptional in some way. We need to cut through the exceptional aspects of Larry’s story.

And nothing is more exceptional about Larry than quantification. To get at the truth, we need to unmask the measured man.

Part IV: Unmasking the Data

By now, I hope you’ll agree that much of Larry’s approach has little to do with data and quantification. You need the right strategy, the right attitude, the right collaborators.

But eventually you have to get real about the technology, right? Bruce Wayne is not Batman until he puts on that mask, dons that gear and hops into the Batmobile. Kapow! Bonk! Wham!

Larry certainly thinks so. He sees data as the fundamental driver of science. “There is never too much information,” he told the BBC in 2013.

Never? Even heroes have blind spots and Larry is no exception.

The dark side of quantification

To say the scale of quantification that defines Larry’s vision is exceptional is to dramatically understate the point. As Bowden reported, Larry envisions “‘a distributed planetary computer of enormous power,’ one that is composed of a billion processors and will enable scientists to create, among many other things, a working computational model of your body.”

Larry understands that few people have his skills for collecting and analyzing data, to say nothing of his resources. But these limitations are not even the greatest challenge. There are problems inherent in all data-driven investigations.

Given enough data, you will find something wrong with everyone. Reflecting on these hazards and a proliferation of interventions, Bowden suggested that the quantified life “might itself belong to the catalog of affliction, filed under Looking too closely, hazards of.”

Disease-fighting and crime-fighting can be all consuming. (MIT Technology Review; DC Comics)

Quantification also entails expensive tests, discomforts and risks. In 2012, Larry estimated his personal outlay on tests ranged from $5,000 to $10,000 per year. False positives may send patients down blind alleys that actually cause harm. We’ve discussed how measuring and monitoring has become a part of Larry’s daily life. For some, such an all-consuming focus on measurement would threaten to consume their precious lives.

As reported by Cohen, even Larry’s own physician William Sandborn acknowledged the risks outweigh the benefits for most patients. But Sandborn maintained, “None of those things apply in Larry’s case.”

So how do we mere mortals follow Larry’s example? If data is so important, and the need for data is insatiable, how can we ever join the search for a cure?

The truth is that data serves an important but narrow purpose within our problem solving activities. Data doesn’t drive progress, but it can draw attention to the things that do.

Not all data are created equal.

Abnormal data and problems

Larry compared his observational focus on the microbiome as a completion of Darwin’s quest, observing finches in the Galapagos. The analogy is telling: Much like Darwin and his expeditions, Larry collects data to expand his view of his body.

Our subjective symptoms and experiences are insufficient. Larry argues that the quantification of signs is what matters. His doctor once asked “Do you have any symptoms?” Larry replied, “No, I don’t have symptoms, I got data!”

Larry and Batman use analytics to get a deeper view. (Sandy Huffaker; Warner Bros. Interactive / Telltale Games)

Elsewhere, Larry dug a little deeper, revealing that it’s not just any old signs, it’s the problematic ones that have the most to offer. In a paper from 2015, he wrote, “The greatest insight seems to come from multivariant analysis involving several variables from different sources that have abnormal values.”

Consistent observations are used to highlight changes, changes point to problems, and problems point to explanations.

Eventually Larry hit the limits of what was known of his condition. As Ariana Eunjung Cha reported in 2015, “It has been nearly three years since Smarr discovered the issue, and he’s tens of thousands of metrics down the road, but he has yet to find a way to treat it. ‘People overestimate what knowledge can do for you,” [Larry] said with a shrug.’”

Larry understands the challenge in turning data into understanding. And that difference is the real driver of Larry’s search, the driver of all scientific progress and problem solving, including your cure.

Let’s recap and summarize what Larry’s story has taught us.

Summary: How to Find a Cure

There is no single method that will lead you to your cure. Anecdotes and human interest stories are insufficient. We need to explain Larry’s example so that we can highlight those aspects of his behaviors that truly matter.

Here’s a start: The pursuit of a cure is just a specialized case of the pursuit of progress. Breakthroughs don’t happen overnight. Would you be content to know you’re moving towards a cure? Is there a good explanation for how people make progress?

The physicist David Deutsch offers a remarkably far-reaching account of how progress is achieved. Following the philosophy of Karl Popper, Deutsch explained that knowledge grows through an iterative process of guesswork and constructive criticism (or in Popper’s terms, conjectures and refutations).

Lost in Larry’s story of technology and quantification is the idea that problem solving is the pursuit of good explanations, not the accumulation of facts or data. In science, quantification is essential, as experiments are the most stringent form of criticism. But experiments aren’t all of it, or even the biggest part of it.

More relevant to our specific role, quantification isn’t the inalienable responsibility of patients. There are problems to solve and errors that are impeding your path forward. Our moral duty, as contrarian patients, is to preserve the means to remove errors in our care.

This explanation may seem counterintuitive. How can the relentless attention to problems lead to a solution? How do I “preserve the means for correcting errors” when I don’t know anything about medicine or how it works?

Like every great detective story, the answers are hiding in plain view. Larry is a problem hunting, explanation pursuing, error correcting leader.

And like you, he’s the most essential contributor: the CEO, the Chief Error Officer.

Be The Chief Error Officer

Larry was unwilling to wait passively for a cure to find him. He accepted his irreplaceable role as the leader of his healthcare team.

Medicine is slow to change. If you want to keep the process moving, if you want to make sure your care doesn’t degrade to rote behaviors or inaction. We do this by asking questions that may illuminate errors. When you ask your doctor a question, they have to ingest that question, if only momentarily. This is in itself catalytic, as it engages their critical thinking.

As patients, why are we so afraid to ask questions? Doctors expect we know nothing about medicine, so what do we have to lose by bringing that ignorance out into the light? And frankly, we wouldn’t be having this conversation if the solution to your problem was already in-hand.

What if Larry had been wrong about his condition? What if he misdiagnosed the problem? Would he have been embarrassed? Maybe. Would he have stopped asking new questions and raising new problems? Absolutely not!

Medical knowledge is formidable, but it’s really but a raft in the ocean of what is still unknown. The human body and the trillions of organisms within it are incomprehensibly complex. I often think of this whenever I’m summoning the courage to ask a question. With so much left to learn, we are all understandably adrift in ignorance.

Of course, I would much rather be on a raft than alone in the ocean. There’s a strong temptation to climb onto that raft with your doctor. But that’s a mistake, too. Good CEOs don’t overstep. Too often patients act like second rate doctors, micromanaging their care. Overburdening that raft will likely make both of you sink.

Instead, you need to ask, How can I make this raft bigger? What questions can I ask that will get this elephant moving? How can I be an effective CEO?

Don’t act like you know the solutions. Keep your focus on hunting problems.

Problem hunting

When Larry started his journey, he had a problem. He was overweight. He wanted to understand why and how he might get into shape.

Larry wasn’t satisfied with just losing weight. He suspected he had other problems brewing. It wasn’t an aimless quantification project. It included routine investigations recommended for older men, such as blood tests for heart disease and colonoscopies for bowel disease.

This led to a discovery and more problems. Although he wasn’t symptomatic, one of his signs was off the charts, a blood marker associated with inflammation. Larry likes to say he had no symptoms, he had data! In fact, he had an unexplained problem.

Even when Larry found his diagnosis, he found more problems. He struggled with the reality of the diagnosis, a very human reaction to a profound change. But he got moving and embraced each new problem.

Larry noticed a pattern of inaction in clinical medicine that was impeding his progress. His doctor initially ignored the signs. “Come back when you have a symptom,” his doctor said. A second doctor also dismissed his project as academic. But Larry kept hunting problems. As necessary, he even recruited new collaborators to replace those who rejected his leadership role.

This iterative process of problem hunting is what progress looks like from the inside. While problem hunting may seem futile in the abstract, it’s remarkably optimistic and catalytic in practice. Larry made substantial and consistent progress in the process, and so will you.

But how do you find new problems to keep the process going? Contrary to popular belief, it isn’t guided by data. In fact, the pursuit of explanations was Larry’s guide all along.

Explanations as your guide

Explanations travel hand-in-hand with problem hunting. Larry didn’t aimlessly read from the millions of journal articles available, he let the evolving explanation of his condition direct him.

Larry discovered explanations of nutrition and exercise to lose weight. He leveraged explanations of preventative medicine to survey his overall health. He connected his signs and symptoms to explanations of the underlying causes. “Once I had come to terms with this diagnosis, I began to wonder what had caused it.”

Crohn’s disease is a chronic, incurable autoimmune disease. So Larry asked, Why do I have an autoimmune disease? He developed his own explanation of his disease, based on his growing understanding of biological systems. This provided context for his project, guiding him to new problems and new investigations.

Explanations like these guided his criticism, his reading, his monitoring, his testing, his questions and investigations. Kurisu highlighted this defining aspect of Larry’s approach, “Larry is constantly asking the question, why. Why did this happen? Let’s take a deeper look.”

Previously I suggested that the first, perhaps the only question you need to ask your healthcare team is Why? In practice, it’s a relentless cycle of Whys. Why do you think this medicine, this treatment, this test, this specialist will help me? Why gets the lumbering elephant of healthcare moving.

Some experts caution against medical decisions based on explanations. But you won’t be alone in asking. As discussed in my previous article on medicine and artificial intelligence, there are many clinical and scientific researchers who are challenging the lack of emphasis on theory and explanations in clinical medicine. You need to add your voice to the growing chorus.

Progress isn’t found in the accumulation of evidence, facts or data, and neither is your cure. The key to making progress is finding better problems to replace the problems you have now. The pursuit of good explanations holds the key to your cure. Your job, as the CEO, is to make sure the lumbering problem solving elephant of healthcare keeps moving.

One good question may be the only thing standing between you and your cure.

Thanks to Aaron Stupple for reviewing an earlier draft of this article.


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— — — . The Man Who Saw Inside Himself. The Atlantic. March 2018.

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— — — . An Evolution Toward a Programmable Universe. New York Times. December 5, 2011.

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— — — . Can you coordinate the dance of your body’s 100 trillion microorganisms? TEDMED. May 22, 2013.

— — — . From Omics to Action. Exponential Medicine. November 8, 2016.

— — — . The Emergence of Digital Mirror Worlds. Global Interdependence Center La Jolla, CA February 3, 2020

— — — and Bob Knight. Completing Darwin’s Quest: Discovering the Dark Matter of Biology. University of California Television (UCTV). June 16, 2015.

— — — and Michael Kurisu. Future Patient: Larry Smarr, PhD. University of California Television (UCTV). June 7, 2018.

— — — , Catherine Mohr, Sonia Ramamoorthy. Precision Surgery. Exponential Medicine. January 1, 2018

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