Rishi Manchanda answers questions about the new TED Book “The Upstream Doctors,” which looks at the environmental and social factors that play a big part in individual health.

We all think we understand the formula for keeping healthy — eat right, exercise, don’t smoke, skip dessert. But that picture is vastly incomplete, perhaps fatally so. In the eye-opening new TED book, The Upstream Doctors: Medical Innovators Track Sickness to Its Source, physician Rishi Manchanda says that while our individual health is highly dependent on our daily behaviors, it may be even more strongly influenced by the social and environmental conditions in which we live. Manchanda argues that the future of our health, and our healthcare system, depends on growing and supporting a new generation of healthcare practitioners who look upriver at the source of our health problems, rather than simply opting for quick-hit symptomatic relief.

These “Upstreamists,” as he calls them, are practitioners on the frontlines of health who see that health (like sickness) is more than a chemical equation that can be balanced with pills and procedures administered within clinic walls. They see, rather, that health begins in our everyday lives, in the places where we live, work, eat and play. Upstreamists — who may be doctors, nurses or other clinicians — know that asthma can start in the air around us, or from the mold in the walls of our homes. They understand that obesity, diabetes and heart disease partly originate in our busy modern schedules, in the unhealthy food choices available in our stores and even in the way our neighborhoods are designed. They believe that depression, anxiety and high blood pressure can arise from chronically stressful conditions at work and home. And, just as important, these caregivers understand how to translate this knowledge into meaningful action.

TED’s Jim Daly caught up with Rishi Manchanda to find out more about his philosophy. An edited transcript of their conversation follows.

You say medical care is just one of the components that shapes our health. What other forces determine how healthy we are as a society? In which areas are we deficient?

Experts often think of five general health-defining forces: genes and biology; behavior; medical services; social environment (the formal and informal ways we relate to one another); and physical environment. The latter two, often referred to together as the social determinants of health, are significantly more powerful drivers of wellness than medical care. The social determinants are shaped by the power and resources that people have, all of which are influenced by the policy choices we make as a society. These policies and our social and physical environment influence the behaviors and choices we make every day. The problem is that, with the current standard of care in medicine, healthcare often ignores and fails to alter these forces in order to help patients and communities lead healthier lives.

Is this a matter of life and death?

As a practicing physician, I think it is.

For whom?

In the book, I share the stories of patients with illnesses related to housing, transportation or hunger problems. Healthcare providers often treat symptoms for patients like these, but they don’t help connect patients to solutions that could address the root causes of their illnesses. So people often suffer unnecessarily for months, even years. And health care is not designed to intervene earlier and improve “upstream” social and environmental conditions and prevent illness in the first place. Recent evidence from the Institute of Medicine indicates that Americans — rich or poor, minority or not — don’t live as long as their counterparts in other rich countries, despite the fact that the United States spends more than any other nation on healthcare. In large part, this so-called “U.S. health disadvantage” is due to unhealthy social and environmental conditions in our neighborhoods. If we hope to get more value from our healthcare system, we must equip it to provide a better standard of care — one that can improve health where it begins.

That’s so interesting. Is it that the quality of the U.S. health care system is unevenly distributed?

Yes, there have been historically uneven levels of healthcare spending among regions and populations. But the ways in which individual providers and hospitals spend their healthcare dollars also plays a major role. While some choose to spend and practice wisely, too many providers and hospitals do not. They choose high-cost procedures, devices or drugs even when they’re not required and can expose patients to unnecessary risks or when lower-cost alternatives can provide the same results.

Another major and under-appreciated reason for variations in healthcare quality: In a nutshell, healthcare simply doesn’t do enough to understand or treat health where it begins — like where we live, work, eat and play. Providers and hospitals tend to do a poor job providing care that’s tailored to the social and environmental context of a patient’s life. This affects the quality of care, especially for populations that suffer higher levels of disease due to social risk factors, such as unhealthy housing or workplaces. Incentives shape all of these quality-related issues, from the national down to the neighborhood level.

In the book, you lay out a plan to transform our “high-cost, sick-care system into a high-value, health-care system.” What are the first steps you’d take?

We, as patients and providers, can take several important and immediate steps to radically improve healthcare. One step involves engaging clinicians to think about creating a better standard of care that considers the upstream forces that shape our health. The book lays out a framework and detailed steps to go about this work. In one of those steps, I describe a rating system that patients can use to assess and choose healthcare providers based on their demonstrated commitment to improve health where it begins.

The book notes that social and environmental forces on health are also capable of changing our DNA. How?

Epigenetics, an emerging field of science, examines the link between environmental exposures and the regulation of our genes, especially as they pass from one generation to the next. New discoveries in epigenetics now reveal that exposure to toxins, such as chemical pollution or even severe emotional stress, can significantly affect the health and development of individuals and their children. One study I discuss in the book showed that children born to mothers who experienced stress and psychological abuse during pregnancy were significantly more likely to have DNA changes that reflected a higher sensitivity to stress hormones, when compared to children of women who did not suffer abuse.

Many Upstreamists had some kind of early experience that opened their eyes to the social nature of health and medicine. What was yours?

Long before medical school, I had a chance to work in different settings, from rural India to immigrant, working class communities in the Boston suburbs. Both experiences allowed me to explore the intersection of health and social development. Along the way, I came across incredible role models and stories of communities that were able to dramatically improve health outcomes through civic participation, education and the promotion of policies and laws that focused on prevention.

When is it hard to be an Upstreamist, to go beyond diagnosing and prescribing and to tackle the root causes?

It’s hardest to be an Upstreamist when the business model in healthcare, which is typically based on a fee-for-service model, prevents clinicians and staff from getting the time, resources or support to tackle the root causes of disease. Still, there are great examples of present-day Upstreamists who have applied their leadership skills and creative talents to have some success in addressing root causes.

Which health care systems around the world do you admire? Which can we learn from?

Places like Kerala, a state in southwest India, have achieved significant health improvements by investing in an equitable distribution of primary care and prevention. We have much to learn from healthcare systems in these places about how Upstreamists work.

The Upstream Doctors: Medical Innovators Track Sickness to Its Source by Rishi Manchanda is available now. Get it directly from TED Books, on Kindle, Nook, or at the iBookstore.

And check out Paul Farmer’s rousing endorsement for this important book »

Physician and anthropologist Paul Farmer, who co-founded Partners in Health, comments on the new TED Book, “The Upstream Doctors.”

By Paul Farmer

At the end of almost a decade spent in teaching hospitals and clinics, most (we hope all) physicians have honed their clinical acumen by focusing on the care of the patient who is right in front of them. Perhaps this is as it should be: as patients, we don’t want our doctors (or nurses or social workers) distracted by “outside” considerations such as the suffering or concerns of other patients not there in the exam room or, heaven forfend, by abstractions such as the extra-personal social forces that place people in harm’s way. We want the doctor focused on us, by bringing expertise and attention to our specific “illness episode” and even to our minor aches and pains. That’s what we want: laser-like focus, to use another term from the medical profession, on our own “chief complaint.”

Or do we? What if most of our aches and pains and many of our serious ailments come largely from those outside forces and abstractions? What if we want to prevent disease or complications of it by altering our risk of poor outcomes (not just death, but predictable or unforeseen complications of the chronic conditions and growing infirmity that most of us will one day endure)? What if we acknowledge that we live not only in bodies but in families, homes (mostly), neighborhoods, and cities? What if our lives outside of the clinic or hospital are often difficult and even, for some people and at some times, almost unendurable? What if our clinical diagnoses are not our chief complaints?

1. The Upstream Doctors, by Rishi Manchanda

Dr. Rishi Manchanda’s TED Book addresses all of these questions with clarity and vision and humility. His vision is informed by long experience, illuminated by the experience of his patients, and solidly buttressed by a great deal of data. The book’s title is borrowed from a well-known parable. Three friends come upon a terrifying scene: as a broad and swift river approaches a waterfall, they see floundering children being swept by in the current, heading towards the cataract. The three friends do the right thing: they jump in and save the drowning children. But the rescuers’ horror is compounded when more kids keep coming down the river. Finally, one of the three starts swimming away from the struggling children. Over the objections of her fellow Samaritans, panicked as they continue their heroic rescues, she swims upstream “to figure out what or who is throwing these kids in the water.”

It’s not that Manchanda is arguing in these pages that we don’t need to save all those already swept into perilous waters. It’s rather, he argues, that we need to divert some of our attention and resources—perhaps more than a third of them—to addressing the root causes of that peril. In other words, we need our physicians to be technically competent, excellent listeners, and able to understand pathogenesis—especially when sickness is not caused, or caused solely, by a microbe or an accident or a readily identified genetic mutation. Make no mistake: Most sickness in this world, whether in South Central Los Angeles or in my workplaces of Boston and rural Haiti, is caused not by a single event or pathological process but by many of them in concert. And most of these causes are to be found far upstream of the etiologies we are taught to seek in medical school and in teaching hospitals.

Effective care for most illness requires understanding the social conditions of one’s patients.

These “causes of the causes” are largely social and environmental ones, as laid out in the clear prose of Dr. Manchanda’s book. Even when etiology is more downstream, effective care for most illness requires understanding the social conditions of one’s patients. Take, for example, the case of Veronica, one of his patients from South Central Los Angeles. In clinical parlance and practice, the story would go something like this: Veronica, 33 years old, presented with recurrent and worsening headaches; these were accompanied by fatigue and malaise. The headaches interfered increasingly with her “activities of daily living.” She sought care for her symptoms in an emergency room, where she was “worked-up” for recurrent headache, given medication for pain, and told to return if she did not get better. She returned twice, still in pain, and subsequent work-up included a CT scan, routine blood tests, and a lumbar puncture. These revealed nothing. One doctor, we learn, suggested that Veronica “was exaggerating her pain simply to get narcotics.” The emergency room staff, probably frustrated, referred her back to a primary-care doctor, which is where she started in the first place. Still her headaches persisted, she took more sick days, and felt she wasn’t doing enough for her young children; she worried, in fact, about losing her job. One of these three ER visits alone cost more than her monthly rent.

When Veronica came to his clinic, an “upstreamist” approach led Dr. Manchanda and his colleagues to do a different kind of diagnostic work-up and to propose a different kind of treatment plan. With little probing, Veronica, still in pain and by now exasperated, allowed that she lived in an apartment that was damp, infested by roaches, and full of mold; she couldn’t afford to move and the landlord wasn’t about to repair the leaky plumbing of her small, ground-floor apartment. The diagnosis, Manchanda thought, was migraine headache triggered by chronic allergies and complicated by sinus congestion. Allergens in the damp apartment probably also accounted for her son’s frightening asthma flares, another source of anxiety for Veronica.

Decreased costs and better outcomes for all concerned: if that’s not a formula for value, I don’t know what is.

So far so good: any competent physician or nurse ought to be able to make the diagnosis. Most could do so without advanced medical training; many mothers could, certainly. But the upstreamist approach is not merely to inquire about the causes of the causes; it also calls for addressing them. The clinic in which Dr. Manchanda practiced as an upstreamist works with community health workers and tenants’ rights groups which, in essence, extend the clinic right into their patients’ homes (if they have them) and lives. The medical staff connected Veronica to a community health worker, who could visit her at home and help make sure she was able to obtain and take the medications likely to give her short-term relief from her symptoms. That’s one of the things that community health workers do—or would do if only we had enough of them around. As for her housing conditions, another partnership came into play: a tenants’ rights advocacy group, long active in Veronica’s neighborhood, petitioned the landlord—this time with a doctor’s note in hand—to make the improvements that were always part of his contractual agreements and were in keeping with local building codes. Veronica got better, as did her son. She also stopped using the emergency room for primary care; from then on, most of her care occurred right in her home or in a nearby clinic termed a “patient-centered home.”

It’s not that Dr. Manchanda and his colleagues were not involved in her ongoing care but rather that, in an upstreamist vision, Dr. Manchanda’s colleagues necessarily include community health workers and advocacy groups and citizens concerned to promote healthy neighborhoods. This approach works with, not on, patients. Together, Veronica and her new partners in care, from clinic staff to community health workers and other advocates, improved the quality of that care, increased the effectiveness of her physician, and lessened her utilization of high-cost but ultimately ineffective, for her, emergency services. Working together, this team also improved the quality of Veronica’s housing, lessened her son’s affliction, and thereby broke a vicious cycle all physicians see far too often: study after study, in city after city, has shown us that it is very expensive to give mediocre medical care to poor or near-poor people living in a rich country. One might even argue that this upstream approach improved the quality of her doctor’s life, too.

Decreased costs and better outcomes for all concerned: if that’s not a formula for value, I don’t know what is. But a better understanding of efficiency, effectiveness, and value in health care is not the only reason to adopt upstreamist approaches or to read a book about them. Understanding more about the causes of the causes will help make medicine matter, help make it better, in part because it forces us to be better listeners. Bertolt Brecht’s haunting verse, “A Worker’s Speech to a Doctor,” published the better part of a century ago, tells a story all too similar to Veronica’s:

When we come to you

Our rags are torn off us

And you listen all over our naked body.

As to the cause of our illness

One glance at our rags would

Tell you more. It is the same cause that wears out

Our bodies and our clothes.

The pain in our shoulder comes

You say, from the damp; and this is also the reason

For the stain on the wall of our flat.

So tell us:

Where does the damp come from?

It can be argued, and often is, that controlling the dampness and mold in Veronica’s flat is not the job of a physician. But to argue that such understanding of causality is not the job of an effective health care system is wrong-headed for a host of clinical, moral, and economic reasons. Explaining these reasons is the primary task of Manchanda’s book, just as it is the primary task of social medicine and its many component disciplines. Addressing the causes and consequences is the primary task of all practitioners, whether based in hospitals or clinics or communities. Seeing them addressed, upstream and downstream, is very often the primary concern of our patients.

These are not new insights, as Brecht’s poem suggests, but as our nation’s health care costs continue to spiral out of control without leading to the expected and wished-for results—looking at the usual indicators of population health, the United States lags far behind most wealthy countries, even though we spend more than any other—these insights are more urgently needed than ever. In Dr. Manchanda’s words, our current standard of care isn’t working well for those who need it most. It’s not that modern medicine isn’t living up to our hopes for new diagnostic and therapeutic tools, although we could, if his prescriptions were heeded, always use more of those. It’s rather that medicine, as it is now practiced, has sharply defined boundaries. These borders keep us from understanding ill health and from doing our jobs well. All the technological fixes in the world are not going to repair our broken health system, not if helping the Veronicas of our world matter to those who now debate its future.

2. Just who is Rishi Manchanda, and how is he qualified to make this diagnosis and to write such prescriptions?

For one, his experience as a clinician and an activist is both deep and broad. Deep because it takes a long time to train as a physician and longer still to complete training in both internal medicine and pediatrics, as Manchanda was the first to do at the University of California, Los Angeles. His experience is broad not only because he is formally trained in public health, but also because he has studied health disparities and their remediation in Botswana, Mozambique, South Africa, and India. Such settings can be the font, as emerging consensus has it, of significant “reverse innovation.” And from South Central LA to the rural reaches of northern India to the cities and towns of southern Africa, Manchanda has learned, again and again, that those who help design health systems need to better understand these upstream determinants of health and ill health.

But it’s one thing to understand and other to act. It’s still another to act in a manner that draws on sound analysis. In other terms, it’s one thing to diagnose an illness and another one to treat it; it’s yet another matter, as Manchanda explains in reflecting on Veronica’s experience, to shoulder real responsibility for treating illness effectively. It’s not as if the many doctors and nurses that she saw, in the emergency room or the clinic, make the wrong diagnosis. It’s our collective practice that is malpractice. Our models of caregiving and care delivery can themselves be altered by more upstreamists’ analysis only if we do as Manchanda does and learn to work with others outside of the hospital, in the neighborhoods in which our patients live, in the schools in which they learn, and in the settings in which they work.

Rishi Manchanda began learning these “delivery” and civics lessons well before he had a string of letters after his name or the clinical credentials he earned at UCLA. It was during early visits to northern India that he first worked with grassroots groups seeking to promote health equity, democratic governance, and social and economic development. When he returned to Boston for medical school and public health training, which he undertook at Tufts University, the young Manchanda also joined the National Health Service Corps and a number of groups promoting health equity. It was shortly thereafter, in 1998, that I was lucky enough to meet him at a clinical conference and to hear of his goal: to lead a life of service as a physician to those too often left behind by medical progress and to see their rights to health care expanded through improving systems and through civic engagement at many levels. It’s gratifying to me, and fortunate for his patients and students and co-workers, that Rishi Manchanda has met these goals and many more.

How much of the problem was due to fractured and inconvenient systems of care? Were the upstream problems really beyond the reach of a coalition of concerned providers?

Dr. Manchanda’s interest in the planet’s poorest and most medically neglected has led him back to southern Africa to help design delivery systems to address AIDS, the leading killer of young adults there. It’s an illness so clearly distributed and worsened by large-scale forces beyond the reach of conventional models of care—labor migration, deep poverty, civil conflict, and jarring inequalities of all sorts, including gender disparities—that any system designed to treat AIDS based solely within the hospital or clinic will fail. That’s a lesson Partners In Health, an NGO seeking to promote health and social justice through both “upstream” and “downstream” efforts, first learned in Haiti and then again in Peru, Mexico, Rwanda, Malawi, and Lesotho. The good news is that we can innovate and change, and we did that by working with community health workers and other partners in each and every one of these settings. These systems innovations can be brought back to the United States. The year I met Rishi Manchanda, I’m proud to say, he was an intern at Partners In Health.

While still a student in Boston, he was lucky enough to work with another upstreamist innovator, Heidi Behforouz. Since, as The Upstream Doctors notes, the pantheon of social medicine doesn’t count as many women as men, I will add that Heidi is another hero of mine: a primary care doctor at the Brigham and Women’s Hospital and true “partner in health” in every sense of the term, Heidi and her team have spent years providing care for patients struggling, in the shadow of Boston’s teaching hospitals, not only with AIDS (and other chronic medical conditions) but against poverty and its attendant social disarray. Some are homeless or almost; many are jobless or work in dead-end jobs with few benefits; many don’t speak English or speak it poorly; few have good health insurance; some are “illegal aliens” (surely one of the most bizarre labels we’ve yet cooked up) and some have other problems with the law; some are elderly and frail; most have more than one affliction. In short, these were Rishi Manchanda’s preferred patients.

In the eyes of most of our colleagues, however, these particular patients were “failing medical therapy” for AIDS, which was revolutionized for some by the advent, about 20 years ago, of effective therapy. But in Dr. Behforouz’s view, medical therapy was failing them. Even though most were and are eligible for such therapy through publicly funded programs, they were not adhering to the treatment nor enjoying ready access to many other social services. Was the primary problem the non-compliant patients, or were their upstream problems, from housing instability to running afoul of the law and the other “synergy of plagues” that ran together in their lives, limiting their ability to comply, keep appointments, fill prescriptions, and all the other things we ask of patients. How much of the problem was due to fractured and inconvenient systems of care? Were the upstream problems really beyond the reach of a coalition of concerned providers?

For many of these patients, we learned, the problem was delivery. Dr. Behforouz has shown that by providing regular care and social services with the help of community health workers, as in Haiti and Peru, we could expect patients who are failing (or being failed) to do much better than those receiving “standard” care, which is delivered primarily in clinics and at the time of the providers’ choosing. This is true whether the outcomes followed are clinical ones (regarding AIDS, these would include CD4 count, viral load, and incident opportunistic infections, as well as mortality) or markers of health system utilization (for example, emergency room visits or failure to fill needed prescriptions or to show up for an appointment) or patient satisfaction. Dr. Behforouz’s team has also shown that the cost of providing good community-based care is less than providing hospital-based care with little in the way of follow-up at home—the standard of care that emerged in the United States over the course of the previous century.

For patients with chronic diseases, like AIDS or poorly controlled diabetes or major depression, good hospital care with little community-based care usually adds up to mediocre outcomes.

Shifting efforts towards the home and towards prevention, including secondary prevention of poor outcomes among those already diagnosed with AIDS or diabetes or major mental illness, leads to better outcomes. Quality goes up, as of course does convenience to patients and their families; costs go down, especially if we tally the costs of inaction.  Again, this is what value in health care looks like.

Sustaining this work, and making these arguments against a constant undertow of censorious opinion, is hard work—even though the arguments are, as readers of The Upstream Doctors will learn, increasingly irrefutable. The formal health care system, including the hospitals and clinics, don’t routinely recruit, train, credential, or pay community health workers; its institutions are not rewarded for doing so any more than they are for helping clear an apartment of mold or mildew. It is against precisely such perverse incentives that the protagonists of systems change in U.S. health care, including physicians like Heidi Behforouz and Rishi Manchanda, and innovative organizations like HealthLeads and HealthBegins, now struggle. And a struggle it is.

Some of these protagonists, including those of HealthBegins, are featured in this book. That’s because Rishi Manchanda and two other physician-rescuers decided to swim upstream against this undertow to found a health start-up, a “think-do tank” that might help address upstream problems in Los Angeles and beyond even as they seek to train a new generation of providers able to make these links between the large-scale and the local and to remake our very notion of what medicine is. HealthBegins’ protagonists include the patients, of course, but also community health workers and health activists and human rights lawyers and others who are building a vibrant movement in Los Angeles. They are, for example, the authors of the important “South LA Declaration of Health and Human Rights” and have worked within high schools and hospitals and other institutions to teach and learn more about health equity and to engage the citizenry to do so, too. Manchanda and others have helped to start and staff a clinic for homeless veterans in LA, who are often, because of a lack of a safety net to catch them before they hit the ground, among the “super-utilizers” of emergency and hospital care. They are also key faculty in an ambitious effort to train or re-train doctors and nurses as upstreamists, and thus to improve care delivery while leveraging the very care process with the opportunity to learn and to innovate, and to improve health for those who too rarely enjoy it.

Our world badly needs more upstreamists, especially those who do not ignore the need to innovate in system design and to incorporate new technologies into an equity agenda.

Clinicians need, early in their training, to understand the ways in which poverty and other structural or extra-personal forces (including institutionalized racism and gender inequality) can constrain the agency of patients. We’ve used the term “structural violence” to describe the harm done to people in this way, and have documented this harm, and discordant claims of causality regarding its origins, in Haiti and other settings of extreme poverty. But that harm is readily enough registered in the United States and, as Manchanda recounts, in a wealthy, inegalitarian and (sometimes) ostentatious metropolis in California. The state is the birthplace, after all, of some of the technologies that might be harnessed to the needs of those served by organizations like HealthBegins or the Homeless Patient Aligned Care Team. Given all of the resources there, can’t we find new gizmos to prevent or mitigate that harm? The Upstream Doctors answers this question with a cautious optimism born of experience in a broken system. Manchanda wants new tools and new “platforms” but knows they will be effectively deployed—they will only prove “scalable”—if they are linked to serious efforts to reform the system.

The lessons learned by Manchanda, which are succinctly summarized in this book, are also an antidote to simplistic “solutionism,” which holds that the U.S. health care crisis (or other complex social problems) can be addressed through technological innovation alone. Evgeny Morozov cites a couple such enthusiasts, who are representative of such strains of solutionism. According to one of them: “Instead of paying doctors and hospitals to repair your body, you can monitor yourself to avoid illness. Instead of heeding marketeers’ offering of fast foods and instant pleasures, you can set up your own life so that you’re bombarded with messages promoting health and conscientiousness.” Morozov’s riposte is caustic but dead-on: “Here is the mid-set of an atomized consumer who couldn’t care less about health care reform but is only preoccupied with maximizing his or her own well-being.”

In contrast to some of our colleagues in social medicine, Rishi Manchanda is no Luddite. His book is rife with enthusiastic stories about new technologies that can help us “quantify the self,” and about the need for electronic medical records and new online platforms that can help upstreamists and their neighbors and allies come together to solve many of the daunting problems laid out in The Upstream Doctors. This is the work of social entrepreneurs. Nor does Manchanda believe that we all need to focus on prevention rather than care, or to reject sound, if downstream, clinical strategies and tools as distractions. Too often, the Stanford pediatrician Paul Wise warned us 20 years ago, “those who elevate the role of social determinants indict clinical technologies as failed strategies. But devaluing clinical intervention diverts attention from the essential goal that it be provided equitably to all those in need. Belittling the role of clinical care tends to unburden policy of the requirement to provide access to such care. In a time of growing conviction, in certain circles, that smart technologies will solve all of our social problems, it’s important to acknowledge that technology, including diagnostic and therapeutic innovations, can help us solve many health problems, but only if we remember the importance of using it fairly and wisely and compassionately. The real problem with many new technology schemes, as Morozov notes, is not that they’re “too smart” but rather that they’re not smart enough: “a truly smart system would find a way to turn us into more reflective, caring, and humane creatures. Technology can certainly assist in that mission, but both the technologists and the social engineers guiding them would have to have a very different mind-set.”

Rishi Manchanda and his colleagues at HealthBegins have the right mindset: a deep respect for the tools, new and less so, we need to take care of the sick and to prevent unnecessary suffering; a knowledge of our health care system and its weaknesses and assets; an awareness of the importance of civic engagement in addressing upstream and downstream problems; a good sense of the human resources we might need, upstreamist clinicians among them, to transform American health care delivery. HealthBegins counts a number of practitioners of clinical medicine who do not scant the lessons of social medicine. They want, as do those working with HealthLeads and with Partners In Health, to build “delivery platforms” able to use these tools, and those sure to follow, in an equitable and humane manner.

So in response to my rhetorical question about Dr. Manchanda’s credentials and experience, note that he has, despite his relative youth, already emerged as one of the leaders in the field of social medicine, a field to which he has contributed for well over 15 years. His book will teach or remind you of the importance of this approach—an upstream approach that does not ignore downstream problems—in addressing the structural problems faced by the working poor, like Veronica, or the homeless veterans who are “super-utilizers” of a system not designed to link community-based care to hospitals or even to community health centers. Manchanda’s social activism and civic engagement—the hard work of being a doctor who is also a citizen—can help us to re-imagine a delivery platform that might deliver true value for all those who need.

3. Why should all of us, regardless of where we live and how healthily, care so much about social medicine?

Why should people outside of the medical profession, however broadly conceived, read this book and consider deeper civic participation in the quest for improving our health and our health care? I will offer three reasons to act in support of the proposals laid out neatly in Part V of Manchanda’s volume.

First, understanding and addressing upstream causes of ill health is one of the best ways, as the data almost always show, to improve our collective well-being. But neither the understanding nor the addressing will ensue without the engagement of a broader public beyond health care providers and the administrators of our fragmented health care system. Using a common enough trope, Manchanda terms this “health care transformation powered by you.” Among the reasons that Manchanda returns so frequently to the importance of citizens’ engagement in the pressing topics of our times: there are not enough primary care providers in our country and far too few upstreamists to complement them. All of them who seek to acknowledge and address their patients’ social determinants of health and illness face, in our current system, “regulatory, cultural, and financial obstacles,” including, invariably, the “fee-for-service straitjacket” that has slowed much innovation in care delivery. Manchanda and others know we need a  cultural shift that comes only with broader participation and changes in systems and in the rules that govern them. Mindful of Morozov’s critique of the idea that we must bring every citizen-consumer up to speed on arcane and complex topics (“Why do we expect citizens to care about every single issue under the sun, as if the very idea of delegation would ruin our democracy?”) in order to solve them, I would argue that all of us need to learn a lot more about how and when our medical system works—as it did last month in the Boston Marathon bombings—and how and when it doesn’t, as laid out in The Upstream Doctors. Dr. Manchanda and other upstreamists, fond as they are of certain new tools, are not seeking to promote some sort of “omniscient cosmopolitanism” through technological fixes such as those seen in “the quantified self movement.” They argue, rather, that health care—your own, others’—should not be only in the hands of specialists and experts like him.

Second, the current system is, it is widely noted, unsustainable. I will repeat myself here: it is very expensive to give mediocre medical care to poor people in a rich country. Although it may sound crass to say so, the overall health system doesn’t give good value for money. It’s neither efficient nor effective in addressing or preventing many of the chronic problems most of us will one day face. And we all know health care costs an awful lot, although how much it costs isn’t really clear and we can’t rely on hospital bills to tell us much about the true cost of care. It certainly can’t be termed a cost-effective system by any of the standard, often fetishized, criteria so often tossed about in policy and academic debates.

Health care systems can be imbued with the values that may refocus medicine on caregiving.

Third and finally, it’s urgent that we go beyond utilitarian arguments to continue to stake moral claims for improving access to quality health care for all. Increased efficiency and lower costs, though important, are not the alpha and the omega of health care improvement, and still less of improvement in health itself. There is a great need, these days as ever, for compassion for and—dare we say it?—solidarity with those who shoulder the heaviest burdens of illness and premature or unnecessary suffering. Most of these people are not likely to read a TEDBook, nor can they easily heed even loud and incessant reminders to improve, by themselves and with “will power” and perhaps a few new gadgets, their diets, their exercise patterns, and their living conditions. Many of them still live in poverty or hover above it in frightening proximity, only a chronic disease or two away. It’s clear that these patients, on the edge or over it, are Rishi Manchanda’s primary concern, as they are mine. But there’s no reason to believe that we cannot all be part of a broader movement to reject market fundamentalism and its attendant belief that health and health care are just two more in a long line of products that we, the customer or “client,” can consume to good effect. Health is created with others, just as we can together dismantle systems that usually deliver mediocre or downstream or tardy care to the poor and otherwise vulnerable. This is true in rich countries as in poor ones.

We doctors can also work with others—from professions ranging from law to education, from businesses ranging from tech start-ups to food producers, from sectors public and private—to re-imagine and rebuild a health care system that is safe and effective and efficient and able to serve especially those who would benefit from it most. For health care systems, if built by informed and compassionate people like Rishi Manchanda, can be imbued with the values that may refocus medicine on caregiving. For all those concerned with the health and well-being of the poor or otherwise marginalized, of the frail or the elderly, of those bent under the weight of serious illness, The Upstream Doctors offers important ideas and examples of solutions to their current predicament—and thus to our own.

The Upstream Doctors is available now. Get it directly from TED Books, on Kindle, Nook, or from the iBookstore.

Physician and anthropologist Paul Farmer is co-founder of Partners In Health, a nonprofit that provides health care in poor communities in Haiti and across the world. He is the Kolokotrones University Professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School, and chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston. His most recent book is To Repair the World: Paul Farmer Speaks to the Next Generation.

uChek uses the iPhone’s camera to capture the color changes in commercially available urine dipsticks. Results of the test can be stored, emailed and analyzed over time.

It may not be glamorous, but it’s true – each year, urinary tract infections lead to more than 9 million doctor visits in the United States alone. But the infection can now be tested for through an iPhone app — uChek — developed by TEDFellow Myshkin Ingawale. This app could also be an effective tool for diabetics whose doctors have recommended regular urine analysis, and for the monitoring of bladder, liver and kidney disorders. It could also be a powerful tool for healthcare professionals in the developing world who hope to bring testing to patients wherever they are, instead of the other way around.

Ingawale, who previously created the noninvasive anemia diagnosis tool ToucHb, has just released the app, which was demoed at TED2013. But there have been adjustments made since.

“Early prototypes like the one demoed at TED 2013 were ‘work in process’ and were susceptible to certain ambient light changes and movement errors, and when checked against a conventional laboratory urinalyser it showed lower accuracy,” Ingawale says in a Q&A with the TED Fellows blog. “We made some design changes in the system — most notably, the introduction of our patent-pending ‘cuboid’ — a foldable, reusable stand for the iPhone, which improved the accuracy of the new system, making it comparable with a laboratory urinalyser.”

Ingawale explains that the changes were needed to move uChek from being considered a “wellness tool” to being a “medical device.”

Next up for Ingwale — expanding uChek to Android and other platforms. And, of course, coming up with new ideas for medical apps. “This is our first really big initiative in the world of apps,” he says. “We are looking forward to seeing where this road leads.”

At TED2013, Rose George talks about a major global health problem—the 2.5 billion people who live without toilets. Photo: James Duncan Davidson

A single gram of poop contains 50 diseases, one million bacteria, 1,000 parasites, 100 worm eggs and 10 million viruses, by journalist Rose George’s tally. For people who have flushing toilets, this is something that they rarely have to think about. But for the 2.5 billion people in the world who have no toilet at all, feces is to blame for a devastating toll of disease.

Consider these other numbers. Four thousand children die every day from diarrhea, a common symptom from exposure to many of those fecal microbes. That’s more than die from HIV/AIDS, tuberculosis and measles combined. Each year, $260 billion is lost because of lack of sanitation. Despite this, just 10 to 25 percent of related budgets focus on sanitation, compared to 75 to 90 percent for clean water. Rose George: Let's talk crap. Seriously.Clean water is no help when it is continuously contaminated by poor sanitation.

In today’s talk, given at TED2013, George describes how she “plunged into the world of sanitation, toilets, and poop,” an odoriferous adventure that she chronicled in her 2009 book The Big Necessity: The Unmentionable World of Human Waste and Why It Matters. If you’re hankering for even more dirty talk, we spoke with George about people’s reactions to her project, the surprisingly wide-ranging impact of sanitation and the future of poop.

In your talk, you start off with a story about your own bathroom experience — the first time you thought, “Wait, where is this stuff going?” What happened after that? How does a reporter start researching poop?

Well, there’s a long story and a short story. I’ll give you the short one. The first thing I did when I decided that I was going to dive into the world of poop was look at who was doing stuff in that world. The first I came across was the World Toilet Organization. So one of the first things I did was to go to their annual show in Moscow. I ended up in a Russian winter near the Kremlin, and the WTO had its exhibit on one floor and, on the floor below, was a fur coat exhibition. There were more people in the fur coat exhibition.

It’s quite a select gathering of people. It’s certainly changed over the past six years, but at that point, it was really quite a small field. That’s where I started making my acquaintances and getting to know who was who and who was doing what. A few people I met in that couple of days ended up being written up in the book — like Joe Madiath in Orissa, and Jack Sim. This guy Scott Chapman, who I met in the café, looked really bored. We started having this conversation, and he said, “Why should I be interested in toilets?” I started telling him what I had learned by that point — that 2.6 billion people don’t have a toilet — and he looked really surprised. He became a really enormous toilet evangelist. So that was really quite fun to watch.

That is where I started, and then I went to a couple of other WTO events. I just ended up sort of wandering around the world with people who I found were doing interesting things.

What was it like pitching the topic of poop to editors and your agent? What was their reaction? Did they get it initially, or did it take some convincing?

I have two main publishers. My first was the British publisher Portobello. It was bit of a weird process because I went to them with another idea for a book, about Darfur. For various reasons nobody wanted it, and the publisher there, we were sitting in his little office and he said, “Rose, I don’t want that book but I do want you.” I can’t remember the exact list [I pitched him] but toilets was about number three. His face was not that impressed. And he said, “Um yeah, well, what do you mean?” So I started on my 2.6 billion, and Sulabh International, and untouchables in India who have to clean toilets with their bare hands in this day and age. And I do remember that he actually got up out of his chair with excitement, and from then on was fully behind it.

Then on the back of that book deal was a four-part series for Slate on the world of sewage. I went down to the sewers in London and looked at a campaigning group in London called RATS, Rowers Against Thames Sewage, and I went to Sewage School and hung out with kids learning to make sewage soup and how to clean sewage. And it was great — really good fun. Subsequently, I ended up getting a publishing contract with Metropolitan Books, and they were absolutely behind it from the beginning. There was never any question — which is weird. There is certainly a perception that Americans are more prudish about this kind of stuff, but that absolutely has not been the case. Americans have been much more enthusiastic about this book all the way through, and I’ve done far more American radio interviews, far more American publicity, and I still get emails from Americans and Canadians. So that’s been quite a revelation for me.

Why do you think this topic is so taboo in general? Obviously there are various reactions depending on where you are, but why in general do you think this is something we don’t talk about enough?

I actually don’t think it’s true that it is taboo — I just think there’s no avenue for discussion about it. It’s been my experience that people are very happy to talk about it. When I was doing the research, which was a two-year process, honestly only about two or three people changed the subject. And I was asked all the time what I was working on, and I’d always say ‘toilets’ or ‘public health’ or ‘sanitation.’ Invariably, people would pause just to take that in. Then they would go, “Oh, well I’ve got a great toilet story!” The thing is, we do or think about this stuff every day. Every parent with a toddler has to think about it when they change a nappy or diaper. Everyone who has to find a decent toilet in a shopping mall has to think about it. Everybody has to think about it because they spend a lot of time in the toilet.

I think there are two areas where poop still is taboo. I think it’s been taboo in advertising on TV. The toilet industry and the toilet paper industry have felt unable to be frank about their product, but I think that is changing quite a lot. In the last few years, there have been lots of plain-speaking toilet paper ads that I’ve seen in the US and in the UK as well. But the more important place where I do think it is very taboo still is in the corridors of power, and in the people who fund sanitation as a development issue. Certainly when I started, it was considered for some reason unspeakable. Politicians don’t think it is a vote-getter because they don’t hear people demanding toilets — whereas they do demand clean water. The other thing is that it sort of gets kicked around between various ministries. Because sanitation has so many effects across all aspects of development — it affects education, it affects health, it affects maternal mortality and infant mortality, it affects labor — it’s all these things, so it becomes a political football. Nobody has full responsibility. There’s no Minister of Sanitation. There doesn’t necessarily need to be one, but the responsibility for it in a political environment gets shared around and doesn’t really get the attention it deserves.

I think that’s changed now because sanitation has become a human right, so governments are going to be obliged to take it seriously. I think that’s a wonderful change. I think the taboo is breaking all over the place, so it is quite exciting.

You mentioned all the different areas that poop and sanitation actually touch. In your talk, you also mention education and economics. At what point in your research did you realize that your topic had such wide impact? Was it a gradual process, or was it something you had a hunch about early on?

It was definitely a learning process. I mean, everybody is an expert on poop, really, but I started out not knowing how to make the connection. Because none of it is rocket science. If you have a girl who doesn’t have a toilet at school, she is not going to want to go to school when she’s got her period. It’s pretty straightforward. But I just didn’t make the connection. Only along the way, it was talking to people like Joe Madiath or the Water Supply and Sanitation Collaborative Council, the UN advocacy agency that deals with sanitation — people who were in the field. The other thing was there wasn’t much connection between people working in sanitation. There’s all sorts of divisions in development — in water, and health, and education and sanitation — so you kind of have to learn from all sorts of people.

But the economics, that was actually specifically a guy called Guy Hutton who’s been really, really excellent at putting together the economic argument. And again it makes sense. If people can’t work, obviously there’s going to be an economic impact. But I would have never linked that to the toilet.

When you started your research, did you have a hunch that toilets would have such a serious impact on human health?

I had no idea that people — that children — were dying of diarrhea at the rate that they do. That was a real shock – in fact, I still find that shocking. It’s completely shameful because it is so preventable.

Another thing I found really striking were the unexpected health aspects. For example, malnutrition: Children who are malnourished, you can find them in a well-fed family. Relatively recently, people have figured out, it sometimes is because they have diarrhea. So no matter how many high-protein foods the child is given, it goes straight through them. There’s now been research that links sanitation to stunted growth. That’s pretty new to me. And vaccinations. When my book came out, someone wrote to me who is a vaccinator. And he wrote, “You know, people just don’t realize that sometimes because these kids are malnourished and because they have diarrhea, we have to give them six or ten times the amount of vaccine to take it in. People don’t know the connection.” They don’t link sanitation to all these things. I find that really fascinating.

On a lighter note, what was the silliest thing you learned about toilets or poop? Were there any crazy gold-plated toilets, or crazy advanced Japanese toilets?

Oh yeah. I used to work at Colors magazine as a writer and researcher, before I started writing the book, and someone had a bit of an obsession with toilets. We used to regularly feature the latest gold-plated toilet, usually from somewhere in Asia. And then there is of course a senator in South Korea who built a toilet-shaped museum, or a toilet-roll-shaped museum, I think. There’s all kinds of stuff. And I think it is important to have the funny humor stuff, because that is what disarms people and makes it easier to talk about.

People like Sulabh International, a fantastic Indian NGO that has built toilets all over India, they know that, so they set up the International Museum of Toilets, which is in a compound near the international airport in Delhi. And it’s great. It’s just one room, but it’s got replicas of toilets and it’s pretty humorous. They have a copy of a French commode in the shape of books.

Wacky is fine — I knew I had to have some humor in it. Sulabh really helped, and Japan helped as well. But I always was careful and determined not to write a book of toilet humor. Other people have done that, and that’s fine, but it is a serious subject. It was quite tricky doing that balancing act.

Yeah. I’ve been to Japan and I was amazed about the toilets and the technology they have.

Once you use a Japanese toilet, you’re spoiled.

Are there any sanitation initiatives that you think are doing a particularly good job acknowledging this poop problem and trying to address it? I’m thinking in particular of the Gates Foundation’s Toilet Challenge.

Over the last two or three years it’s been really exciting because a lot has changed. I think the Gates Foundation should absolutely be applauded, because I think they’ve been really instrumental in that. As soon as Bill and Melinda Gates started talking about toilets — and they openly use the word ‘toilet’ — that gave the subject huge legitimacy that it didn’t have before. I think that’s broken the ice for NGOs that were maybe a little shy about talking about toilets. They disguised it as water-related illnesses, or as ‘people need water.’ And they do. But what’s the dirtiness in the water? It’s usually poop. I think that’s been an opening of the floodgates a little bit.

And there’s all sort of exciting stuff going on. Sanitation hackathons, people working on apps. Matt Damon doing his famous press conferences. All that is really, really great. And it’s new. It makes me hopeful actually that maybe something has changed.

Speaking of the Toilet Challenge, do you have a favorite amongst the winners?

No I don’t, actually, and I’m sort of careful not to. When people ask me, “What’s the best toilet? What’s the best solution?” I’ve always said the solution is flexibility. The solution is understanding that we need all sorts of solutions. So I think they’re all great. This is a bit of a cop-out, but my favorite is the actual job description that they put out, which is that it has to be low-cost and it has to be sustainable. To me, that is brilliant. I don’t mind beyond that. The more ideas, the better. It’s pretty obvious if you travel in the developing and the developed world, it’s not one-solution-fits-all. Some countries have more water than others — some can afford to use clean water to flush their poop away and some can’t.

So I think the best thing that reinventing the toilet did is not provide actual innovations in toilets — which is true, it does need innovating — but make us examine the system itself, which has been unquestioned for so long and is high-energy and high-cost. Even in the US and the UK, our sewers are crumbling. It’s a pretty unsustainable system. I think that’s what they’ve done that is really valuable. 

One last question: What do you find most hopeful about the future of poop?

That we’re talking about it. For heaven’s sake, I’ve just done a TED Talk on it. Six years ago, I never would have thought that was possible. I think things have changed so rapidly in the past few years, and I am really hopeful, actually, even though the statistics are still so woeful. Even though it’s the most off-track in the Millennium Development Goals, I think there is a legitimacy around it now. There are ads on American TV for, I can’t remember which toilet paper, but they were saying toilet paper doesn’t clean you — it’s like having a shower with a dry towel. And I think, “Oh, I said that!” But it’s great to see it on TV. I remember four or five years ago, Toto put an ad in Times Square showing bare bottoms, and they had to be taken down. So I really think there’s hope that this is going to be a more talkable subject. And maybe when people get an invitation from an NGO or a charity, maybe they’ll give money for a toilet and not just a clean water supply.

Eric Dishman is used to thinking about how technology can transform the world of health care. As an Intel Fellow and general manager of the company’s Health Strategy & Solutions Group, his job is all about finding innovative new approaches to healthcare. Eric Dishman: Take health care off the mainframe And he’s no stranger to talking about them. At TEDMED 2009, in the talk featured to the left, Dishman asked us to “Take health care off the mainframe,” boldly comparing the current American health care system to mainframe computers circa 1959.

But just two weeks ago, at TED@Intel, Dishman tells the much more personal story of his battle with kidney disease.

To say that his battle is with disease isn’t the full story. Instead, as he describes in this second talk, his fight is not only with faulty kidneys, Eric Dishman: Health care should be a team sportbut also with a flawed healthcare system.

Two decades ago, when he was a college student, Dishman had several fainting spells. This kicked off months of testing by six different doctors, in what he describes as a “clash of medical titans.” Dishman was told he would not live longer than two or three years.

The doctors were wrong — but not because they weren’t good doctors. Instead, they were stuck in an old-fashioned system that lacked technologically advanced tools and a culture of communication.

With smartphones and tablets becoming increasingly ubiquitous, and social networks connecting us more and more, Dishman sees three major steps to achieving better, individually-tailored healthcare that takes pressure off of brick-and-mortar hospitals and clinics, and empowers a patient to be the captain of a team working toward their well-being: Care anywhere, care networking, and care customization. To hear what each means, watch this talk.

On the stage, Dishman demonstrates MobiSante’s smartphone-based ultrasound imaging system, called MobiUS, which he used to scan his newly donated kidney. A doctor hours away at Legacy Good Samaritan Hospital in Oregon examined the kidney live over the Internet, dispelling worry over a few dark spots and noting they’d double check them at Dishman’s next scheduled appointment.

Here is a round up of other disruptive products and projects that could hugely impact the way we think about our health care. Have more to add? Put them in the comments.

Health tests on your smartphone
MobiSante’s affordable, portable ultrasound isn’t the only medical device to take advantage of mobile networks and the power of smartphones. Some other examples:

• Lifelens’s app can detect malaria in a blood sample and allow a diagnosis from across the world.
• University of Oxford’s stethoscope kit is a low-cost way for patients to take recordings of their hearts to send it to their doctors for analysis.
• MIT Media Lab’s NETRA is a cheap eye test that connects to a smartphone. Here, a look a TED Blog Q&A with one of its creators.
• Withings’ blood pressure monitor lets users take their own blood pressure with an iPhone, iPad, or iPod touch.

The doctor isn’t in… but that’s okay
InTouch Health’s RP-VITA Remote Presence Robot is the first-ever that will connect doctors to patients across the world.Daniel Kraft: Medicine's future? There's an app for that Doctors can do rounds in a hospital across the country or the world, controlling Jetson-like robots that show their faces on a screen. Through the robots, the doctors can visit with and diagnose patients from afar.

Another less-futuristic option: as Daniel Kraft, the chair of the FutureMed program at Singularity University, mentioned in the TED Talk, “Medicine’s future? There’s an app for that,” the website AmericanWell.com can connect you to physicians and specialists in your state who do appointments over secure chat, Skype or the telephone.

Health care at your local drugstore
While it isn’t tech-heavy, the move towards what this recent article from The Economist calls “retail clinics” is taking some health services out of hospitals and doctor’s offices and into malls and popular pharmacy chains. The article details how CVS and Walgreens are bringing basic care clinics to many stores – 640 and 372 of them respectively.

Medical devices that can leave the hospital
The U.S. Department of Health and Human Services put out a recent request for information seeking new approaches for smart medical hardware that can remain on even during power outages in natural disasters. The goal is to to protect hospital patients on life-saving medical devices — including ventilators or IV pumps — by keeping the machines on and mobile if there is need for evacuation.

Are you interested in where health care is going? Watch the TED Playlist, the Future of Medicine, below.

Photo: James Duncan Davidson

At TEDMED 2012, Ben Goldacre shared a startling reality: that doctors are not able to read all the studies conducted on a pharmaceutical before prescribing it to their patients. Ben Goldacre: What doctors don't know about the drugs they prescribeThis is because of a bias in medical research toward positive results – while one study confirming a drug’s effectiveness may be published, the results of other studies may simply be unavailable. Goldacre warns that about half of all drug trial result are buried – and this is across all medical fields – and thus doctors are left hugely uninformed even as they reach for their prescription pads.

This week’s TED Weekends on the Huffington Post explores Ben Goldacre’s talk on the truth about medical research. Below, find a selection of essays to pique your interest:

Ben Goldacre: We Need to See Pharma’s Failures

TED can sometimes portray science in triumphalist tones, with fabulous innovations that are changing the world forever. But the real action in science is often around dirty, messy, angry problems, and my TED Talk is about the dirtiest I’ve seen yet.

Doctors need the results of clinical trials to make informed choices, with their patients, about which treatment to use. But the best currently available evidence estimates that half of all clinical trials, for the treatments we use today, have never been published. This problem is the same for industry-sponsored trials and independent academic studies, across all fields of medicine from surgery to oncology, and it represents an enormous hidden hole for everything we do. Doctors can’t make informed decisions, when half the evidence is missing. Read the full essay »

Wray Herbert: Is the Placebo Effect Dangerous?

Physician and medical gadfly Ben Goldacre is well known for his relentless crusade to keep medical researchers and drug makers honest — and improve healing in the process. His recent and popular TED Talk focuses on a particular form of research misconduct that strikes at the core of all evidence-based treatment — the failure to publish negative findings. This publication “bias” is not subtle or inadvertent in most cases; indeed the opposite. The deliberate non-reporting of results unfavorable to a drug’s reputation is often motivated by greed, and can be lethal to patients.

As Goldacre and others have described elsewhere, other clinical research biases are less blatant and criminal, but they nevertheless undermine consumers’ trust in science and clinical evidence. I’d like to discuss one of those less obvious biases here today — this one from psychological science. It’s the result of a fundamental misunderstanding of placebo effects and control groups — a misunderstanding that, scientists are now arguing, invalidates any claims of effectiveness for almost all psychological interventions. Read the full essay »

Toni Miller: Getting Past the Idea of Failure

In his eye-opening talk, “What Doctors Don’t Know About the Drugs They Prescribe”, doctor and epidemiologist Ben Goldacre shows us the ways in which researchers can, and often do skew the data in studies, particularly those conducted in trials funded by the pharmaceutical industry, in order to influence the perception of their products. He points out that often times as much as half of the data is missing because the researchers typically do not publish the results of negative studies.

In absence of the full picture, doctors and the public can easily fall prey to the idea that a particular drug or treatment is effective, when in fact, the data would say otherwise. This is a serious problem. It is not a matter of simply persuading people to buy a new wrinkle cream. In many cases, particularly in the case of heart medication or cancer treatments, it is the difference between life and death. Read the full essay »

Stacey Kramer: The best gift I ever survived

Kramer’s poignant talk is featured on today’s edition of TEDWeekends on the Huffington Post, as she and other bloggers share stories of turning hardship into gratitude. Here are three powerful stories:

Harshada Rajani: The Cost of My Catastrophe

Finding opportunities out of tragedies, making dreams out of nightmares, and discovering gifts out of punishments. Those seem like the great accomplishments of an insightful survivor, but near impossible for a naive fighter. My wonderful life was stolen like a secret, thrown away like garbage, silenced like a sin, for no reason any doctor or priest could come up with. This sounds like nothing more than a harsh tragedy, seems like nothing more than an inescapable nightmare, and feels like nothing more than an unfair punishment, for being a little too happy. I can’t readily see any opportunities, dreams, or gifts in this mess I have to now call my life. But what if I could dig a bit deeper, find in me new levels of maturity, and see this as a gift?

It’s so much easier to lazily lie in my comfortable bed of bitterness. It’s so much easier to get lost in the jargon of negativity and regret. It’s so much easier to hate the world for doing this to me. But if I consciously choose to look past the simplicity of this as a punishment, I know I can realize the complexity of this as a gift. Read the full essay here »

Lawrence G. Calhoun: Can Trauma Really Be a Gift?

Stacey Kramer describes her experience with a brain tumor as a gift. She wouldn’t want to wish serious illness on anyone, but her own illness was a gift nonetheless. Elements of this gift included deeper and more meaningful friendships, a strong sense of love and support, new vitality, and deeper spirituality.

Stacey’s experience mirrors a body of research of which I’ve been a part for many years. It’s the study of what my colleague Richard Tedeschi and I have called post-traumatic growth. The idea that the struggle with very challenging life circumstances can lead to positive transformation is ancient. It seems to be part of the human condition. Our work suggests that the transformations Stacey experienced are shared, at least in some ways, by many other people facing a wide range of crises. People report changing priorities, having greater appreciation for what life still has to offer, a deepened connection with others and perhaps greater compassion for others who suffer, positive changes in their understanding of spiritual and existential questions, and sometimes a radical change in the direction they choose to take their lives. Read the full essay here »

Stacey Kramer: How My Brain Tumor Was The Most Unexpected Gift I Received

Recently, I spoke to a class of at-risk high school kids. These kids, mostly non-white, have faced many different types of challenges. Some come from abusive parents. Some don’t have parents. Some don’t have a bed. Nearly all rely on the donated food they get at school as their daily sustenance. Every one faces economic challenges of varying proportions. For a few, it takes several buses and nearly two hours to get to school.

These kids are barely making it through high school — at a time when many of my peers’ kids are celebrating acceptances to upper echelon colleges. This school is their last chance. Simply getting to school on a daily basis is a hardship when you don’t have any money or any food. Or anyone to motivate you to do so. Read the full essay here »

Snow was a 19th-century English doctor who’s credited with proving that cholera, a sometimes deadly infection that attacks the small intestine, spreads through contaminated water — and not by “bad air” as was generally believed at the time.

Steven Johnson tours the Ghost MapAs described in Steven Johnson’s 2006 TED Talk, “The Ghost Map,” a particularly vicious cholera outbreak in 1854 at a popular water pump in London killed an astonishing 10 percent of the people who lived nearby. Snow created a map showing which people had consumed the water from the pump and whether they had gotten sick. His map helped convince local health authorities that his theory was the correct one, and by the next severe outbreak in 1866 they officially recommended that people boil water before drinking or using it, curbing the spread.

March 15 marks the 200th anniversary of Snow’s birth, which the London School of Hygiene & Tropical Medicine and affiliates are celebrating in a series of meetings and exhibits. Our present to Snow? We spoke to author Steven Johnson about the impact the doctor has had on the sustainability of modern cities.

When did you first discover the story of John Snow and his cholera map, and what was your first reaction to it?

I first came to it as an information design story in Edward Tufte’s amazingly beautiful design books, and then I kept encountering it in other fields. I’d be reading about a history of epidemiology and I’d stumble across it, or I’d be reading about the history of disease and would stumble across it. I think that is what makes the story and Snow’s role in it so interesting — the way it connects to so many fields.

What were other characteristics of the story that made you decide to write The Ghost Map?

It turned out to fit my expectations or visions of a beautiful story about the interaction between different scales of experience. It’s a story in some ways about the collusion of bacteria and the flow of water: the clean drinking water, contaminated drinking water, and waste in this huge stinking metropolis — the biggest city the world had seen at that point, with two and a half million people. Between those two scales — basically the smallest form that life takes on the planet and in some ways the largest form, the metropolis — you have this individual who’s trying to make sense of patterns that are happening in the city and trying to connect them to patterns and behavior that is happening on a microscopic scale that he can’t even see. That’s crucial to the story — that he cannot see the bacterium. He has to infer its existence from the patterns he’s detecting in the streets of London.

Once I actually sat down to research it, there were a number of things that I found that surprised me and that had not been in the traditional telling of the story. It’s conventionally told as: Snow made the map, he saw the pattern of death pointing to the pump, and he developed the waterborne theory. But in fact, he’d been working on the waterborne theory for a very long time. The map was a marketing vehicle for his idea.

The other thing was the important role, which is very relevant today, of public data. The city had begun releasing more complex mortality reports a decade before the outbreak, and instead of just listing so-and-so died on this date, they would list so-and-so died of this age, this gender, this disease, this exact address. Whatever data they had, they would release in these reports. The whole premise was: You create more data, you release it to the public, and the city is filled with all these interesting amateurs who don’t work for the government who might detect patterns in it. Snow ended up using a lot of that data, in addition to his on-the-ground detective work to build a map, to build his case for the waterborne theory. It’s very much connected to the kind of open data, transparency argument of today. Snow was doing it without computers, but it’s the same idea. So that was a cool surprise.

Finally, Henry Whitehead, Snow’s collaborator. I mean, almost nobody talks about him, and he was crucial to the story. The more I dug in, the more I realized that Whitehead had done all this work Snow really couldn’t have done, because Snow was not a great social connector. A lot of the investigation needed Whitehead’s social intelligence to track down additional data on people who had left the neighborhood. And there’s an argument that without Whitehead’s contributions, the authorities might not have come around to Snow’s theory. I love that because it’s a great example of multidisciplinary collaboration where you have two very different types of intelligence coming together to solve a problem.

In your TED Talk, you mention that modern, massive cities that exist today wouldn’t be possible without Snow’s contributions to epidemiology. Can you elaborate?

This is why the period is so interesting in a sense. There were all these people looking around London in 1854 and saying: This is not sustainable. Human beings are not meant to live in this state, two and a half million people is just too large for a city to work. And they were right on some level — certain things had to be figured out that hadn’t been yet.

One of the biggest was how to deal with all the human waste that is created with two and a half million people so densely populated. [Snow helped make] it clear that the separating of drinking water and waste was an absolute imperative for the city to grow. Making it clear that that could happen — and conquering cholera within 12 years — is just a staggering achievement. And that became a blueprint for every big city in the world. It enabled us to build cities of 10 million and 20 million people without necessarily having to battle these diseases.

Now, developing-world megacities are trying to figure it out with 25 million people. And we haven’t solved all those problems. But one of the things that is so important about Snow’s achievement is that it wasn’t all that long ago. You look back 160 or 170 years and you can point to how awful London was as a city, and compare it to the amount of progress we’ve made since then, and use it as a kind of inspiration for what we need to do now.

That nicely leads to my next question. What are the main challenges these new megacities face?

The root cause is that the growth in these megacities is coming in areas without traditional infrastructure. When you look at the favelas in São Paulo, you have millions and millions and millions of people without a traditional electric grid, without traditional sewage, in improvised communities. It may be that the way to deal this is to just build infrastructure and support them in a traditional way that we pioneered in the 19th century. Or maybe there are new solutions.

Are there mapping tools that are the modern-day, John Snow/cholera equivalent that are helping solve some of these problems?

There are actually. There are a million examples of things like this, precisely because we now have Google Maps where we can drop datasets and anybody can do new dynamic maps of interesting social problems. There were some great improvised maps that were created after the earthquake and cholera epidemic in Haiti.

You just got back from TED2013 in Long Beach, California. What was the most memorable moment for you?

There was a talk by Alastair Parvin about this kind of open-source Creative Commons kit for building small houses, where two people with a 3D printer can assemble one in 48 hours. It was really cool, and his point was about releasing tools so that anyone can build a structure in those developing world megacities that we are talking about. An overwhelming number of the houses are actually built by members of the community cobbled with existing materials. If you have this kind of technology, it helps produce more reliable housing. And I kind of thought, that is a great. That fits perfectly with the Ghost Map.

Additional reading:

Haven’t had enough John Snow? For more, check out the UCLA Department of Epidemiology’s John Snow archive, which has original writing and images, as well as other treats, or try these books:

The Ghost Map: The Story of London’s Most Terrifying Epidemic and How It Changed Science, Cities, and the Modern World by Steven Johnson

The Strange Case of the Broad Street Pump: John Snow and the Mystery of Cholera by Sandra Hempel

Cholera, Chloroform and the Science of Medicine: A Life of John Snow Peter Vinten-Johansen et al.

Video still from Le Chal, courtesy Anthony Vipin Das.

A haunting black-and-white video screened during the TED Fellows talks depicted people speaking into a device and then walking — at first taking halting steps, then more confident strides. As the video unfolds, the camera zooms in on the faces of the walkers — revealing that they are blind.

With his team, TED Senior Fellow Anthony Vipin Das, an eye surgeon, has been developing haptic shoes that use vibration and GPS technology to guide the blind. This innovation — which could radically change the lives of the vision-impaired — has drawn the interest of the United States Department of Defense, which has recently shortlisted the project for a $2 million research grant. Anthony tells us the story behind the shoe.

Tell us about the haptic shoe.

The shoe is called Le Chal, which means “take me there” in Hindi. My team, Anirudh Sharma and Krispian Lawrence and I, are working on a haptic shoe that uses GPS to guide the blind. The most difficult problems that the blind usually face when they navigate is orientation and direction, as well as obstacle detection. The shoe is in its initial phase of testing: We’ve crafted the technology down to an insole that can fit into any shoe and is not limited by the shape of the footwear, and it vibrates to guide the user. It’s so intuitive that if I tap on your right shoulder, you will turn to your right; if I tap on your left shoulder, you turn to your left.

The shoe basically guides the user on the foot on which he’s supposed to take a turn. This is for direction. The shoe also keeps vibrating if you’re not oriented in the direction of your initial path, and will stop vibrating when you’re headed in the right direction. It basically brings the wearer back on track as we check orientation at regular intervals. Currently I’m conducting the first clinical study at LV Prasad Eye Institute in Hyderabad, India. It’s very encouraging to see the kind of response we’ve had from wearers. They were so moved because it was probably the very first time that they had the sense of independence to move confidently — that the shoe was talking to them, telling them where to go and what to do.

How do you tell the shoe where you want to go?

It uses GPS tracking, and we’ve put in smart taps: gestures that the shoe can learn. You tap twice, and it’ll take you home. If you lift your heel for five seconds, the shoe might understand, “This is one of my favorite locations.” And not just that. If a shoe detects a fall, it can automatically call an emergency number. Moving forward, we want to try to decrease the dependency on the phone and the network to a great extent. We hope to crowdsource maps and build up enough data to store on the shoe itself.

The second phase we are working on is obstacle detection. India has got such a varied terrain. The shoe can detect immediate obstacles like stones, potholes, steps. It’s not a replacement for the cane, but it’s an additive benefit for a visually impaired person to offer a sense of direction and orientation.

Are you still in the development stage?

The insole is already done. We are currently testing it. I’m using simple and complex paths — simple paths like a square, rectangle, triangle and a circle, and complex paths include a zigzag or a random path. Then we are going to step it up with navigation into a neighborhood. From there we’ll develop navigation to distant locations, including the use of public transportation. It will be a stepwise study that we’ll finish over the middle of this year, then go in for manufacturing the product.

You’re an eye doctor. How did you get involved in this?

I’m an eye surgeon who loves to step out of my box and try to see others who are working in similar areas of technology that are helpful for my patients. So Anirudh Sharma and I, we’re on the same TR35 list of India in 2012. I said, “Dude, I think we can be doing stuff with the shoe and my patients. Let’s see how we can refine it.” There was already an initial prototype when he presented last year at EmTech in Bangalore. Anirudh teamed up with one of his friends, Krispian Lawrence of Ducere Technologies in Hyderabad, who is leading the development and logistics to get this into the market. We just formed a really cool team, and started working on the shoe, started testing it on our patients and refining the model further and further. Finally we’ve come to a stage where my patients are walking and building a bond with the shoe.

Are these patients comfortable with the shoe?

Yes, it’s totally unobtrusive. And more importantly, we are working on developing the first vibration language in the world for the Haptic Shoe. We’re looking at standardizing the vibration, like Braille, which is multilingual. But even more crucial than the technology, the shoe is basically talking to the walker. How they can trust the shoe? So that’s an angle that we are looking at. Because at the end of the day, it’s the shoe that’s guiding you to the destination. We’re trying to build that bond between the walker and the sole.

Building a bond with the sole. That’s good. I’m going to use that.

Photos: James Duncan Davidson

Daniel Reisel is here to talk about our brains. In particular, how we might change them–and how this kind of thinking might just change the tenor of society as a whole.

He introduces us to Joe, who’s 32, and a murderer. Reisel met Joe in Wormwood Scrubs, a high-security prison that houses England’s most dangerous prisoners. On a grant from the UK Department of Health, Reisel visited the jail to study inmates’ brains and try to find out what lay at the root of their behavior. “Was there a neurological cause for their condition?” he asks. “And if there was a neurological cause, could we find a cure?”

Initial research showed that psychopaths like Joe indeed had a different physiological response to emotions such as distress or sadness. “They failed to show the emotions required; they failed to show the physical response. It was as though they knew the words but not the music of empathy,” Reisel describes. MRI scans (yes, transporting psychopaths across London in rush hour to place them in a scanner, unadorned by metal objects such as, say, shackles, was a nightmare) showed an interesting phenomenon and a tentative answer: “Our population of inmates had a deficient amygdala, which likely led to their lack of empathy and their immoral behavior.”

Acquiring moral behavior is a part of growing up, like learning to speak. By 6 months, we can discriminate between animate and inanimate objects. By 10 months, we can imitate actions. By the time we’re 4, most of us are able to understand the intentions of others, a prerequisite for empathy. But that’s not to say that it’s not possible to learn such behaviors in later life.

Reisel wants to talk neurogenesis. This is the birth of new neurons in the adult brain, and Reisel is fascinated by its promise. He left his work with psychopaths to work on mice, whose brains he studied in very different environments. Some were kept in a shoebox devoid of entertainment (similar to, say, a prison cell); others lived in an “enriched environment.” Mice in the former condition lost their ability to bond with their fellow mouse; those in the latter showed the growth of new brain cells and connections. “They also perform better on a range of learning and memory tasks,” says Reisel. “Of course, these mice do not develop morality to the point of carrying the shopping bags of little old mice across the street. But their improved environment results in healthy, sociable behavior.”

Could this research influence the design of our prison systems? “When you think about it, it is ironic that our current solution for people with dysfunctional amygdalas is to place them in an environment that actually inhibits any chance of further growth,” he says. He’s not suggesting that we should pack up all our prisons. Instead, perhaps we might think of rehabilitation through programs such as Restorative Justice, which encourages perpetrators to take responsibility for their actions. “This stimulates the amygdala and may be a more effective rehabilitative practice than simple incarceration,” says Reisel. It’s a fascinating proposition. “Such programs won’t work for everyone. But for many, they could be a way to break the frozen sea within.”

It’s a charming, chilling, thought-provoking talk. Reisel leaves us with three lessons from his work over the past fifteen years. We need to change our mindset, he says. “The moment we speak about prisons, it’s like we’re back in Dickensian — if not medieval — times. For too long we’ve allowed ourselves to be persuaded of the false notion that human beings can’t change, and, as a society, it’s costing us dearly.” Next, we need to prompt and promote cross-disciplinary collaboration. “We need people from different disciplines, lab-based scientists, clinicians, social workers and policy makers, to work together.”

Finally, we need to use our own brains, our own amygdalas, and we need to rethink our view of prisoners such as Joe. After all, if we see psychopaths as irredeemable, how are they ever going to see themselves as any different? Wouldn’t it be better for Joe to spend his time in jail by training his amygdala and generating new brain cells? Reisel concludes: “Surely that would be in the interest of all of us.”