The Patient Will See You Now

SECTION ONE

Readiness for a Revolution

Chapter 1

Medicine Turned Upside Down

            “Every patient is an expert in their own chosen field, namely themselves and their own life.”

—EMMA HILL, EDITOR, The Lancet¹

            “Health care will be less frustrating when the power shifts from sellers to buyers, and when the patients are more in charge.”

—DAVID CUTLER, PROFESSOR OF APPLIED ECONOMICS, HARVARD UNIVERSITY²

            “It is no exaggeration to say that billions of people will soon have a printing press, reference library, school, and computer all at their fingertips.”

—ERIK BRYNJOLFSSON AND ANDREW MCAFEE, The Second Machine Age³

            “Every aspect of Western mechanical culture was shaped by print technology, but the modern age is the age of the electric media . . . electronic media constitutes a break boundary between fragmented Gutenberg man and integral man.”

—MARSHALL MCLUHAN, 1966⁴

Way back in 1996, the Seinfeld TV show told the story of the “difficult” patient.⁵ Elaine Benes, played by Julia Louis-Dreyfus, developed a skin rash, but doctors kept refusing to see her. The problem was that her doctor had called her “difficult” after an appointment four years earlier, when she had not wanted to change into a gown to get a mole examined. She wanted to have her chart delete this discredit, but the doctors wouldn’t cooperate. Instead, they labeled her “very difficult.” So she worked with Kramer, who posed as Dr. Van Nostrand, to try to steal her chart. That backfired. She never got her diagnosis or chart, and even Kramer was written up in a medical record for impersonating a doctor. The segment is hilarious and at the same time sobering, since it’s a slice of medical life (see https://www.youtube.com/watch?v=ZJ2msARQsKU).

Now let’s fast-forward to two decades later. Doctors are still labeling patients as difficult.^6,7 Patients are typically unable to see, let alone keep or contribute to their office visit notes about their condition and their body that they paid for. Frequently they have to consult multiple doctors for the same condition. It may take weeks to get an appointment. The time with a doctor is quite limited, typically less than ten minutes, and much of that is without eye contact because the doctor is pecking away at a keyboard.⁸

But a new model of medicine is taking hold, one that is democratized—not difficult, but easy. If Elaine wanted to have her skin rash assessed today, all she would have to do is take a picture of it with a smartphone and download an app to process it. Within minutes, a validated computer algorithm, which is more accurate than most doctors, would deliver by text a diagnosis of her skin rash. The text would include specific next steps, perhaps treatment with a topical ointment or a visit to dermatologist for further assessment. Elaine could even download apps to see the ratings of nearby dermatologists, how expensive a visit would be, and even if the doctors themselves were difficult to deal with. When seen by a doctor, she could demand a copy of her office visit notes and also request to review and edit them (especially if she is mislabeled).⁹ Most likely, however, she wouldn’t have to see any doctor. She’d have immediate access at any moment in time, at any location, to a diagnosis of her medical condition. She would not only avoid the delay, inconvenience, and unnecessary expense, but she wouldn’t even have to find someone to steal her chart.

The difference between these two scenarios represents the essence of a new era of medicine. It is powered by unplugged digitization, with the smartphone as the hub. We have seen this model already adopted in retail, travel, dining, entertainment, banking, and virtually every other industry.¹⁰ It’s all on demand and instantaneously executed. This has moved far beyond just having a prosthetic brain for a search or a built-in navigation GPS. In almost any endeavor, getting things done in a flash has become the norm, except in medicine. But that is now inevitable.

Getting first-rate health care will always be quite different from ordering something from Amazon. We’re talking about the most precious part of life—one’s health—not buying a book. But the common thread is the power of information and individualization. We are embarking on a time when each individual will have all their own medical data and the computing power to process it in the context of their own world. There will be comprehensive medical information about a person that is eminently accessible, analyzable, and transferable. This will set up a tectonic (or “tech-tonic”) power shift, putting the individual at center stage. No longer will MD stand for medical deity. What have been dubbed the six most powerful words of the English language—“The doctor will see you now”⁸—will no longer be true. Indeed you will still be seeing doctors, but the relationship will be radically altered.

The doctor will see you now via your smartphone screen without an hour of waiting, at any time, day or night.⁸ It might not be your primary care doctor, but it will be likely be a reputable physician who is conducting part of his or her practice through secure video consults. And those consults will involve doing parts of the standard physical examination remotely. More importantly, they will incorporate sharing your data—the full gamut from sensors, images, labs, and genomic sequence, well beyond an electronic medical record. We’re talking about lots of terabytes of data about you, which will someday accumulate, from the womb to tomb, in your personal cloud, stored and ready for ferreting out the signals from the noise, even to prevent an illness before it happens.

The Power Shift

More is at play than just your “little” big data. Let’s drill down on the term democratization, meaning “to make something available to all people.” Until now, the flow of medical data has been to the doctor. If a patient was fortunate enough, their data, such as results of lab tests or scans, might arrive in the mail. More likely, but still rare, would be for the bottom line (like “everything is normal”) to be relayed via a phone call, often via a nurse or office assistant. The really lucky patient (with a less than 1 out of 10 chance in the United States) might even get an e-mail with attachments that include all their data.

But the world is changing now. Patients are generating their own data on their own devices. Already any individual can take unlimited blood pressures or blood glucose measurements, or even do an electrocardiogram (ECG) via their smartphone. The data are immediately analyzed, graphed, displayed on the screen, updated with new measurements, stored and, at the discretion of the individual, shared. The first time I had an ECG e-mailed to me by a patient with the subject line “I’m in atrial fib, now what do I do?,” I knew the world had changed. The patient’s phone hadn’t just recorded the data—it had interpreted it! A smart algorithm was now trumping one of my skills as a cardiologist. Putting this power in everyone’s pocket could preempt an emergency room visit or an urgent clinic appointment. In our unplugged world full of mobile devices, a diagnosis could now be made anywhere, anytime, by anybody. Or by a machine.

Three other experiences over the past couple of years, attending to airplane passengers in distress, have reinforced my sense that medicine has already transformed. The first passenger turned patient was having chest discomfort and sweating; I was able to confirm with a mobile phone electrocardiogram that he was indeed having a heart attack, which led to an emergency landing. Had the smartphone sensor and app been available, a flight attendant or any other passenger could have done the same thing. Were there any ambiguity, the ECG could have been wirelessly sent from the plane to medical personnel on the ground to help make the call. A young woman having a panic attack with difficulty breathing and a very rapid pulse was the second passenger I met up with. The ECG showed atrial fibrillation, with a heart rate of 140, and upon questioning her it was pretty clear she had an overactive thyroid, which was later confirmed. An amalgam of verbal reassurance and handholding was all that was needed. More recently, a man lost consciousness in his seat soon after takeoff. In this case I performed a smartphone physical exam in the air, with an ECG, blood pressure measurement, a sensor for blood oxygen concentration, and high-resolution ultrasound imaging of the heart, which collectively revealed the passenger was stable, had likely suffered a transient very slow heart rhythm, and that the flight was fine to go on. None of these passengers required a doctor on the plane to make their diagnosis. Although the flight crew had asked if there were doctors on board, all that was needed were the tools to collect the data.

FIGURE 1.1: When the technology was introduced and the number of years (in parentheses, y-axis) for each to be used by 25 percent of Americans. Source: Adapted from “Happy Birthday World Wide Web,” The Economist (2014): http://www.economist.com/blogs/graphicdetail/2014/03/daily-chart-7.

These tools aren’t just for the heart. The sensors now extend to virtually any physiologic metric (such as brain waves, eye pressure, lung function, and mood). Anyone can do multiple parts of their own physical examination, including all vital signs, skin, eyes, ears, throat, heart, and lungs. And just about any routine lab test will soon be available to be assayed via one’s smartphone.

To truly qualify as democratized this has to be capable of spreading among common people, not just the elite or affluent. This is possible. It turns out that smartphones are the most rapidly adopted technology in the history of man. While it took thirteen years for 1 out of 4 Americans to use cell phones, it took only two years for them to use smartphones (Figure 1.1). Indeed, 1 out of 4 people worldwide now use smartphones.¹¹ But we’ve still got the challenge of more than 7.25 billion people on the planet and only approximately 2 billion with smartphones.¹¹ It’s not just about having phones, of course: they need to connect to broadband Internet. And this is coming, too. Internet.org and other initiatives are working to provide free Internet services to people worldwide.¹²

Fortunately, we’ve got Moore’s law in play. We can now stuff over 2 billion transistors into a smartphone, which has exponentially dropped the costs of the technology needed to make democratized, digital medicine available to all. Almost all of the innovations that make the smartphone the hub of medicine’s future are amazingly frugal. For example, the cost of manufacturing the ECG sensors is about fifty cents. Beyond the cost of writing code and developing it, software is free. Smartphones are in the midst of becoming remarkably cheap—projected to cost less than $35, perhaps without all the bells and whistles, but with the key features of an expensive phone intact.^13–15 So anywhere there is a mobile signal, such as in the remote hinterlands of Timbuktu, there is the ability to do all these medical things: capture real-time biosensor metrics, perform various components of the physical exam, and run a bunch of lab tests. That’s a good start for spreading a new medical model for all people. It may just mean that the best way to cut the ever-increasing costs of health care around the world will be to provide cheap smartphones with Internet service to those who otherwise could not afford to buy them.

The Rise of Smart Patients

Patients are intrinsically remarkably smart—they know their own bodies and the context of their lives—and no one has a bigger interest in their own health. That doesn’t mean, however, that they do all (or any of) the right things to stay healthy, but when things do go wrong, they are pretty darn good at detecting a problem.^6,16–18 But we’ve learned that, in general, doctors don’t like smart patients. In fact, a recent study of physician attitudes found that: “patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions.”⁶

Those attitudes won’t be enough to hold back a whole new generation of even smarter patients and hopefully more supportive and smarter doctors. Indeed, they’re already all around us (Figure 1.2). First, consider Jeanette Erdmann, a research colleague of mine who lives in Germany and published her own very personal case report “Forty-five Years to Diagnosis.”¹⁹ At age four she realized she was much slower climbing stairs compared with all the other kids. Her condition precipitously declined when she was working on her PhD thesis, to the point where she was put on a ventilator at night for the rest of her life. But it wasn’t until age forty-five when she “consulted Google” and put in her illness descriptors (muscular dystrophy, hip dislocation, and keloid scarring) that she came up with a rare condition, with less than three hundred cases worldwide, known as Ulrich muscular dystrophy (UMD). A genomic scientist, she had her exome sequenced to confirm that she had the specific mutation that is the known root cause of UMD.

Second, consider Elena Simon, who at age twelve developed a rare type of liver cancer (fibrolamellar hepatocellular carcinoma, FL-HCC).^20–24 There are no known drug treatments for FL-HCC, and its biologic basis was, at the time, unknown. FL-HCC affects approximately two hundred young people every year, and not infrequently proves to be fatal. Fortunately for Elena, surgery to remove the carcinoma proved successful. For a high school science project four years after she was diagnosed, Elena worked with her surgeon and researchers at Rockefeller University to sequence her tumor specimen along with those from fourteen other patients. This led to finding a gene mutation that was present in each and every patient, but not in controls with other types of cancer. That is, they found the cancer’s cause, likely the first step in finding an effective treatment. This led Elena not only to publish their findings in the prestigious journal Science in 2014, but also to develop a website to connect all the individuals affected by FL-HCC around the world.

Lastly, consider Grace Wilsey, who had another rare disease manifest when she was a baby. Dubbed “kids who don’t cry,”^25,26a the disease is in fact far more complicated and leads to loss of muscle tone, seizures, development delays, and liver damage. Her father, along with another father of a child with the same condition, was able to find via social media eight other families with similarly affected children and, by genetic sequencing, to identify a mutation in the NGLY1 gene that was the root cause of the condition.^26b Multiple potential treatments have been identified as a result, and these are currently undergoing testing. Wilsey’s father and one other father published an editorial in a biomedical journal calling attention to the capabilities of parents, social media, and “individuals outside the box” to change medicine, and calling for researchers and physicians not to ignore them.^26a The lead author of the NGLY1 report, Gregory Enns, said, “This represents a complete change in the way we’re going about clinical medicine.”²⁷ As David Cutler wrote in MIT Technology Review, “the single most unused person in health care” is the patient.² That’s a call for democratization.

FIGURE 1.2: Three individuals with rare diseases and a molecular diagnosis: Jeanette Erdmann (left), Elena Simon (middle), and Grace Wilsey with her father Matt Wilsey (right).

I don’t cite these three individuals just because they deserve recognition. Although they all had rare or undiagnosed conditions that were deciphered via sequencing, yielding a precise molecular diagnosis, there’s another important common thread—connectivity.²⁴ This is seen by Jeanette’s use of an Internet search engine, Elena’s ability to bring a substantial number of individuals with FL-HCC together, and Matt Wilsey’s (along with other parents’) use of social media to nail down the root cause of his kid’s condition. That we are indeed electronically hyperconnected to one another and to machines is yet another critical feature of the new democratic model of medicine.

Hyperconnected?

If there’s any question as to whether electronic connectivity between people has taken hold, just consider that Facebook—dating only from 2004—now has 1.3 billion registrants, roughly equal to the population of China, the largest country in the world, and still growing. That represents more than 1 of every 6 people on the planet.

The importance of online health communities, exemplified by PatientsLikeMe, cannot be underestimated. When patients with like conditions can connect with and learn from each other, without the constraints of time or place as they would have with a doctor’s visit, yet another critical dimension of democratized medicine is discernible.

FIGURE 1.3: The rise in connected devices on the Internet of Things from 2003 to 2020, projected. Source: D. Evans, “The Internet of Things: How the Next Evolution of the Internet is Changing Everything,” Cisco Internet Business Solutions Group, April 2011, http://www.cisco.com/web/about/ac79/docs/innov/IoT_IBSG_0411FINAL.pdf. Courtesy of Cisco Systems, Inc. Unauthorized use not permitted. August 1, 2014.

The marked connectivity is taken further when one considers the Internet of Things (IoT). That is the unbridled growth of not only people but also devices that are wirelessly connected via the Internet. The projections range from twenty-eight to fifty billion connected devices by 2020,²⁸ and the implications are profound. This doesn’t just refer to Nest thermometers or connected cars—the bulk of the growth is actually expected to come from sensors, particularly wearable ones that track medical data. As shown in Figure 1.3, the average person is projected to have between six and seven connected devices by 2020. This represents a quadrupling of connected devices in the span of a decade with only 10 percent of growth of the population during that time. The impressive growth of our connectivity—between both people and machines—represents a formidable technologic force that makes medicine’s democratization more likely and more powerful.

These connected medical devices—I call them the IoMT (Internet of Medical Things)—enable sharing not just with a physician or nurse, but with anyone: family members, such as an elderly individual with her caregiver daughter, or peers, such as a network of friends to set up a managed competition (“coopetition”) for best physiologic metrics. And of course sharing could be with machines and algorithms to provide data processing and automated feedback to the individual.

All of these movements of self-generated data by smart, hyperconnected patients represent a serious challenge to medical paternalism. The traditional power structure is top-down. In the book Doctor in the House, Richard Gordon (a physician) wrote, “doctors consider themselves the most evolved of the human species.”¹⁸ The boss has been the doctor, who has long been portrayed, as “doctor knows best.” While the doctor may indeed have the most knowledge, that doesn’t mean he or she knows best. In the new model, the information is no longer flowing from the top. Data and information are not knowledge, of course, and for the latter, the doctor will continue to be its purveyor. Moreover, the intimacy at the heart of the best doctor-patient relationship—where a patient can reveal their secrets and worst fears, or experience the physician’s touch to promote confidence and healing—cannot be compromised and should never be lost.

Still, the relationship is changing and must change. If we liken the new model to the business world, the patient becomes the chief operating officer (COO)—a notable promotion from nobody to senior management. The COO monitors all the operations of the body. He is fully in charge, including of the team in information technology (IT), getting all the relevant data accurately and rapidly analyzed and reported back directly to him. The IT group in this company is really into data visualization and makes graphics for the COO that a small child on the street could understand. The graphic tools make him look brilliant. The COO has periodic and ad hoc reporting to the chief executive officer (CEO), the doctor. The doctor likes being the CEO but is really into delegating responsibility. She’s got many irons in the fire and really doesn’t want to be bothered by the COO unless it’s particularly important. But when that occurs, the CEO is ready to plug in and offer guidance and all her experience, knowledge, and wisdom to deal with a problem. Beyond that, the CEO is a kind and compassionate manager, exceptionally good at both communication and multitasking. The CEO is really into IT, too, realizing that both her performance and the company’s are greatly enhanced when everyone can make full use of computer resources.

How We Get There

In the The Creative Destruction of Medicine,²⁹ I delved into how medicine would become digitized, how we had a new capability of digitizing human beings. But that is a far cry from medicine becoming democratized. As Wael Ghonim wrote in Revolution 2.0, “the power of the people is greater than the people in power.”³⁰ While his book was about the Egypt part of the Arab Spring, enabled by smartphones and social media, the assertion now clearly pertains to medicine, too. When each individual owns and takes part in generating their entire set of medical data and information, including records, notes, labs, images, omics, sensors; when they have complete assurance of privacy and security, such that their identity will not be revealed and their data will not be sold or misused; when individuals become fully respected by their doctors and on an equal footing; when the individual now unabashedly asks the right questions, drives the process, and makes the choices; when individuals have full access to the cloud, supercomputing, and telemedicine, and there is total transparency for data on doctors and hospitals with respect to outcomes, costs, and ratings; when it is for all ordinary people, anywhere in the world. When all that is true, we’re not just talking medical empowerment. We’re talking medical emancipation.

We’ll be taking a deep dive into democratization in this book. It’s divided into three sections. First, we’ll look at medical paternalism parallels from Gutenberg, the historic precedent for change, to explore the new attitudes we all need if, like one leading public figure, we can ever take charge of our medical care. Second, we’ll look at the challenges and opportunities of dealing with our newly acquired data and information. We’ll go through what it will mean to have our own information system, our labs and scans, records and medications, cost and interactions with our doctor. Third, the full impact of these titanic changes will be probed, including the need for hospitals in the future, sharing medical data openly on a massive scale while finding the right balance of privacy and security, and the ability to preempt illness, to flatten the Earth, and to medically emancipate each of us.

In 1450, less than 8 percent of the population in Europe knew how to read, and reading was only for the elite. Johannes Gutenberg liberated the printed word, not to mention the human mind and the common man. No longer was reading only for the elite, such as the high priests. By making books and all forms of printed materials available to ordinary people, the world was democratized in an unprecedented fashion. Knowledge was disseminated widely like never before. Movable type enabled the culture to change far more than at any other time in human history.

Marshall McLuhan, “the metaphysician of media,” was asked in 1969 about Gutenberg and why he thought practically every aspect of modern life is a direct consequence of the printing press.⁴ He said that, first, the mechanization of book printing was the blueprint of all mechanization to follow. Typography became the first uniformly repeatable commodity, and led to Henry Ford, the first assembly line, and the first mass production. Furthermore, it led to widespread literacy, which shaped not only production and marketing procedures but all other areas of life, from education to city planning, as well as industrialism itself. Now—in 1969—he saw another shift as radically concluding:

           Every aspect of Western mechanical culture was shaped by print technology, but the modern age is the age of the electric media, which forge environments and cultures antithetical to the mechanical consumer society derived from print. Print tore man out of his traditional cultural matrix while showing him how to pile individual upon individual into a massive agglomeration of national and industrial power, and the typographic trance of the West has endured until today, when the electronic media are at last demesmerizing us.⁴