Photo: James Duncan Davidson

“This was my cancer,” TED Fellow Salvatore Iaconesi begins his TEDGlobal talk, showing a slide of brain scans taken last summer, when he was diagnosed with brain cancer at age 39.

Since the moment Iaconesi heard the word “cancer” come out of his doctors’ mouth, he noticed something — that the way people related to him turned on a dime.

“When you have something as serious as cancer, your life disappears and you are replaced by a disease,” he says. “Doctors start speaking a language which you don’t understand and which is not really meant for you to understand. Your friends and family start saying, ‘What did the doctors say?’ before they even say hello. You become a disease on legs.”

Iaconesi — an artist and open-source engineer — felt an intense desire to get his medical records and brain scans, to be able to “see what was growing inside of him.” The records were not only hard to obtain, but when he finally received them, they were in a code only meant for other medical professionals.

“I started to understand that this industrial process which we call medicine was not really about me. It was a reduced version of me with all the human complexity taken out of it.”

So Iaconesi decided to use his technical know-how, hack these files, and open them up for anyone to see on the website La Cura. He asked anyone in the world to send him a cure, be it medical or otherwise.

“I asked all the people in the world to join me in my disease and help me in any way they could,” he said, “and together rediscover our complexity as human beings.”

Photo: James Duncan Davidson

Iaconesi made a data visualization of the 500,000 responses he received from the website. He shows it on the TED stage, and notes that the network of cures — multiplying exponentially every week thanks to press attention — reminded him of the cancer he knew was growing inside of him. He received art, music, suggestions for medical treatments, thoughts on lifestyle changes, traditional cures. One artist even printed a 3D sculpture of his tumor. Teams formed as neuroscientists discussed with each other medical options and artists collaborated on pieces related to Iaconesi’s cancer.

“The solutions came from all over planet, spanning thousands of years of human history and traditions,” says Iaconesi.

In the end, Iaconesi had a successful surgery to remove the cancer. “I’m fine, really,” he says. Meanwhile, he implemented many of the non-medical cures submitted to him, and credits these with healing him as well. The experience gave him a new appreciation of human complexity, and of the need for open access.

“[My cures] were created by people’s desire to be a part of a society whose well-being depends on the well-being of all of its members,” says Iaconesi. “I will only stress a single point: Who cares about all of the openness if it’s not matched by radical anthropological and cultural change?”

Photo: James Duncan Davidson

Mark Kendall has a new medical invention that will make anyone with a fear of needles very happy: the Nanopatch, a tiny square (smaller than a postage stamp) that can deliver a dose of vaccine. But beyond solving needle-phobia, the Nanopatch could solve many other problems that now keep vaccines from being completely effective.

Kendall, a biomedical engineer, is thrilled to present this new technology at TEDGlobal 2013 in Edinburgh, Scotland, just two miles from the birthplace of the needle and syringe in 1853. Since this classic delivery system was invented, it’s made huge leaps and bounds in preventing disease and extending human lifespan. But it has stayed essentially the same for those 170 years. And the needle has limitations, says Kendall. Twenty percent of the population is instinctively scared of needles. They also leave open the possibility of needle-stick injuries, which cause 1.3 million early deaths per year. But even beyond that, the needle and syringe may limit a vaccine’s overall effectiveness.

Photo: James Duncan Davidson

Needles deliver vaccines into muscle, missing the immune sweet spot of the skin, says Kendall. Meanwhile, the Nanopatch is designed with thousands of tiny projections dry-coated with vaccine. When the Nanopatch is stuck on the skin, the vaccine is delivered to the right cells, just under the outer layer of skin. Kendall’s research in animals shows that a 450 ng dose of an influenza vaccine was far more effective delivered through the patch than 600 ng of the same vaccine delivered via a needle.

Because less vaccine is needed for Nanopatch delivery, it could make an expensive vaccine more viable to distribute in the developing world. Kendall hopes that it could also help scientists create vaccines for diseases like HIV, malaria and tuberculosis.

Another weakness of needle delivery vaccine is that the vaccine must be a liquid, and it must be refrigerated from its creation all the way through to its delivery into the body — a multi-step journey knows as the “cold chain.” This is a big problem because, according to the WHO, half the vaccines used in Africa aren’t effective because the cold chain has been broken at some point. Because the Nanopatch is coated with a dry vaccine, it won’t need refrigeration.

Photo: James Duncan Davidson

Kendall tells us that the Nanopatch is beginning a pilot test in Papa New Guinea, a developing country the same size as France. The nation has the highest rate of HPV, and yet there are only 800 fridges available to keep vaccines cold. The Nanopatch could help distribute this vaccine there.

Could TED have just witnessed the unveiling of the new needle and syringe?

Photo: James Duncan Davidson

Grégoire Courtine is the head of the Center for Neuroprosthetics and Brain Mind Institute of the Life Science School at the Swiss Federal Institute of Technology Lausanne (EPFL). He starts his TED Talk with a story of a mentor of his, the late Christopher Reeve, who spent the last years of his life in a wheelchair after a paralyzing spinal cord injury. A decade ago, the actor and activist inspired the young Courtine by issuing a stern challenge to think beyond the lab, to go to the rehab center, “watch people fighting to take a step” — and then figure out what he could do in the laboratory to make those people’s lives better.

Inspired by the call for pragmatism, Courtine has worked to develop a new approach to treating spinal cord injuries, which affect some 50,000 people around the world each year. Rather than focus on the classic approach of trying to rehabilitate fibers, he tried a different approach, wanting to “reawaken the neural network that coordinates locomotion.”

Photo: James Duncan Davidson

For the non-neuroscientists among us here at TEDGlobal, he has a ”simplistic metaphor to explain a complicated concept” to try and explain. “Imagine the locomotive system is a car,” he says. “The engine is the spinal cord. The transmission is interrupted; the engine is turned off. How can you reengage the engine?” It’s unlikely that he and his team think about their work in anything like these terms, but Courtine sweetly tells us that these kinds of ideas helped them to develop what he calls ”electrochemical neuroprosthesis.” After a spinal cord injury, the cells below the lesion are still functional; they’re just not getting signals. Could he figure out how to reactivate them? He shows some film of a paralyzed rat, its legs dragging at first, then walking, then running along a treadmill. Amazing, right? The audience gasps at the video. But, not so fast.

“This locomotion was completely involuntary; the animal had no control over the legs,” says Courtine. “Clearly, the steering system was missing.” So the team challenged itself to develop a new system that eschewed the treadmill that guided an animal’s movement. “This is really cool,” he says excitedly, as he shows us the entirely unobtrusive robot harness that was designed to support the 200 gram rat, allowing it to move in any direction but not forcing it to move, as a treadmill does. The rat has to decide on its own to take a step.

The first results were still disappointing. The same rat that moved so well on the treadmill only five minutes earlier was now unable to take a step. ”One of the most essential qualities of a scientist is perseverance,” Courtine laughs. “After seven months of testing, tweaking, and trying new ideas, the otherwise paralyzed rat could stand and, when she decided, sprint or walk.” He shows video of what he describes as the first ever example of voluntary leg movement after a lesion in the spinal cord had caused paralysis. Not only could the rat walk and run, it could even negotiate stairs. *Now* we’re allowed to think this is amazing.

Photo: James Duncan Davidson

“You’re all wondering, aren’t you? Will this help injured people?” Courtine correctly channels the audience. “Me too, every day.” As every good scientist must be, he is cautious. “The truth is that we don’t know enough yet,” he says. “This is certainly not a cure for spinal cord injury.” But he does allow that it might lead to an intervention to improve people’s quality of life. And his dream is to continue his research to develop a personalized program for anyone suffering from a spinal cord injury, to deliver what he describes as “personalized neuroprosthetics.” This is not, he adds, about replacing lost function, but rather about helping the brain to help itself.

“It is not a matter of whether this revolution will occur, but when,” Courtine concludes. “Remember. We are only as great as our imagination, as big as our dream.” A big standing ovation for the young scientist.>

[To see much, much more detail about Courtine's ideas and process, see the web documentary, Project Re:Walk.]

Photo: James Duncan Davidson

Andreas Raptopoulos wants to serve the 1 billion people on Earth with no access to all-season roads — the one-seventh of the world’s population that is too often cut off from critical medicines, supplies and goods. In sub-Saharan Africa alone, 85% of roads are unusable in rainy season. Infrastructure is being built, but at this rate, says Raptopoulos, it will take half a century to catch up. And what would they catch up to? A model of transport infrastructure that takes a vast amount of energy to build and maintain, and is typically congested with traffic, wasting fuel and contributing to pollution. He makes a bold analogy: In the past two decades, regions in the developing world have used mobile networks to create communications systems without having to lay copper wire — could we do the same with transport?

Photo: James Duncan Davidson

His solution: Matternet, a flying, unmanned, self-regulating delivery system that runs 24/7 like the internet — only in the world of matter. Raptopoulos’s network of autonomous quadcopter drones could become the world’s next layer of infrastructure, helping us deliver goods and healthcare to inaccessible regions.

Matternet’s system is made up of three components: electric flying vehicles, landing stations, and routing software, an operating system that runs the whole network. Carrying a 2 kilogram payload, Matternet’s current-model UAVs can cover a 10-kilometer distance in 15 minutes. The drones fly at an altitude of 400 feet, safely out of the way of other aircraft, along preprogrammed, known routes to known landing stations, where they can automatically swap batteries, drop off or pick up a payload, and take off again. Automated route planning help drones navigate such obstacles as network load and bad weather.

But would it work? It already has: the first field test of Matternet drones was conducted in Haiti last year, delivering medication in the Petionville camp set up after the 2010 earthquake in Port-Au-Prince. (Find out more.) The company also hopes to raise funds for a case study to establish a network in Lesotho to deliver HIV/AIDs lab tests to hospitals. And the system is highly cost-effective. A 10 kilometer journey costs 24 cents, of which energy costs 2 cents. In Lesotho, creating a drone network serving 47 clinics and six labs covering an area of 138 square kilometers would cost less than $1 million.

Photo: James Duncan Davidson

As he speaks, there’s a buzzing sound from backstage, and a quadricopter flies out, resembling the top of a Star Wars Stormtrooper helmet with wings. When it lands, Raptopoulos bends down to retrieve a small emergency package, the size of a brick, attached to the bottom. “Imagine if your life depended on this package, somewhere in Africa, or in New York after Sandy.”

And that’s another point: Matternet could also work in the world’s congested cities, says Raptopoulos, acting as a layer of transport sitting between the infrastructure of roads and internet and making life in cities far more livable.

“Imagine if the next big network we build in the world is for the transportation of matter,” concludes Raptopoulos. It seems like a wild idea. After all, drones are not only an unpopular idea in the West, but an unpleasant part of life for those living in countries engaged in conflict. But he insists the vision is worth pursuing, especially for the sake of connecting those 1 billion people to the rest of the world. And for those who think it’s science fiction, he says, “We need to engage in social fiction to make it happen.”

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.

Andrew Solomon: Love, no matter what

As an example, Solomon suggests the case of a deaf child born to a hearing parent. The hearing parents may want the child to be more like them, while the child may find a rewarding identity in being part of Deaf culture. Watch his talk to find out more …

This example led the TED Blog to a phone call with a TED Talks speaker who works at the complicated intersection of hearing and identity: Dr. Charles Limb. In his surgical practice, he performs cochlear implants, an elective surgery that can offer hearing-impaired people an increased ability to hear sound. Charles Limb: Building the musical muscleAnd unlike some of the other examples in Solomon’s talk, a hearing impairment is a situation which, sometimes, a technology can change — which raises the question of self-identity in a whole new way. An edited version of our conversation follows.

What do you make of the suggestion that deaf people might not, in fact, be interested in changing the essence of their selves?

I have this conversation, or a related version of this conversation, with many, many patients who have wondered about implants. They want to make sure that they are not by proxy making a decision that is an ethical one as opposed to a medical one.

And I think this is a reframing of an ethical question that emerged as soon as the idea of a cochlear implant became a reality, which is: “Now we can do this, should we? And if we should, who makes the decision? Who gets the implant?” I wouldn’t say these issues have been resolved with time, but we’ve gotten more comfortable with them as they’ve become less theoretical and more real.

This is a perfect example of where theory and reality influence each other but aren’t exactly the same. What is a very, very controversial idea on paper oftentimes turns out not to be so controversial in real life.

What do you mean by that?

There will always be extreme opinions, where some people feel very passionately about an issue. But really there’s this more average group of patients that feel kind of in the middle about it, which is that a cochlear implant could offer them something but not everything; it could help them, but it’s not necessarily going to define them.

In his talk, Andrew Solomon describes the contrast between vertical and horizontal culture, suggesting that, to some extent, parents should be happy with the way their child is born, not strive to affect it. What do you make of that?

This vertical/horizontal culture thing certainly exists. But here’s one analogy that should be corrected: He says that when somebody is born a certain ethnicity, we don’t think about how to change their skin color, or their hair color — but you have to make a distinction between a trait that is aesthetic, cosmetic or nonfunctional, and one that is about function. With cochlear implants, we’re not talking about how an ear looks, we’re talking about how an ear functions. I think at the very bottom, the sort of tension between how you define illness as an identity, or a deficit or disability, is one that you don’t necessarily want to be too cute about. You can certainly say that anyone who has any kind of impairment can find a community that shares it and that can help that person live a good life. Illness doesn’t mean you have to be miserable or live a horrible life in any way. On the other hand, if you look at it from a brain perspective, humans are born with brain functions to process sensory information. And it’s not like the brain is better off without that information.

From a medical perspective, I think cochlear implants have managed to skirt this balance in a really respectful way. I think a lot of these communities have come together to say, Look, this technology is real. Nobody has to have it, but nobody who wants it should be denied it. We’re not talking about making a decision which erases or dismisses a cultural identity. But if you want it, this is what we can try to do.

By performing a cochlear implant, do you worry that you are changing the identity of a deaf person who undergoes the procedure?

What cochlear implants have done is created a gray zone. And the gray zone is this: People who have cochlear implants don’t have normal hearing, and they’re not also functionally deaf in the same way that the Deaf community has traditionally been. There’s now a few hundred thousand people in the world who have cochlear implants. It’s creating a hybrid, a subset of individuals with a lot of solidarity. Some of them function in the non-hearing-impaired community, and some people function very comfortably in the Deaf community. You have both.

The Deaf community is a very kind and loving community. And I think what’s happening is that the Deaf community is not seeing their community, their culture, be wiped out. This kind of theoretical threat hasn’t panned out. What’s happening with people is, the implant isn’t changing who they are.

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 »

A look at the crystallites of AZT, the first antiviral approved for the treatment of HIV/AIDS. Originally, AZT was created to treat cancer — but it failed in tests.

When you pop a pill, do you know how it works? Most modern drugs target specific molecules, interacting with disease at the molecular level. But while we know the molecular causes of roughly 4,000 diseases, a very slim 6 percent of those diseases have a safe and effective drug to treat them. Why? Because of the incredible difficulty and cost of finding a compound that is perfectly shaped to interact with a molecular cause, and that also happens to be safe.

Francis Collins, the Director of the National Institutes of Health, wants to help this process along. Francis Collins: We need better drugs -- nowIn yesterday’s talk, given at TEDMED 2012, Collins makes a bold case for translational research to produce better drugs, faster. What does “translational” mean? It means research that takes a particular look at basic scientific discoveries and asks: how can we make an actual medicine from this? To that end he helped launch the NIH’s National Center for Advancing Translational Sciences in 2011. NCATS aims to do away with the costly and time-consuming bottlenecks that prevent new drugs from coming to market.

Collins hopes to encourage pharmaceutical companies to open up their stashes of drugs that have already passed safety tests, but that failed to successfully treat their targeted disease. He also wants to look at how drugs approved for one disease could successfully treat another. We can teach “old drugs new tricks,” Collins says in his talk, by matching them to the molecular pathways of other diseases.

Doing so will require academia, the pharmaceutical industry, government agencies and patient advocacy groups to work together, in conjunction with talented researchers and ample funding. After all, a single drug can cost billions to develop. Still, it’s possible.

In his talk, Dr. Collins mentions two failed cancer drugs that were successfully repurposed: zidovudine (AZT), the first antiviral approved for HIV/AIDS in 1987 and, more recently, farnesyltransferase inhibitor (FTI), which was used to successfully treat children with the rapid-aging disease Progeria in a 2012 clinical trial.

Fascinated, we asked Collins to share more. Below, read his list of seven drugs that have been repurposed. Of them he writes via email, “None of these drugs could have been developed without collaborations between drug developers and researchers with new ideas about applications, based on molecular insights about disease.”

1. Raloxifene: The FDA approved Raloxifene to reduce the risk of invasive breast cancer in postmenopausal women in 2007. It was initially developed to treat osteoporosis.
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2. Thalidomide: This drug started out as a sedative in the late fifties, and soon doctors were infamously prescribing it to prevent nausea in pregnant women. It later caused thousands of severe birth defects, most notably phocomelia, which results in malformed arms and legs. In 1998, thalidomide found a new use as a treatment for leprosy and in 2006 it was approved for multiple myeloma, a bone marrow cancer.
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3. Tamoxifen: This hormone therapy treats metastatic breast cancers, or those that have spread to other parts of the body, in both women and men, and it was originally approved in 1977. Thirty years later, researchers discovered that it also helps people with bipolar disorder by blocking the enzyme PKC, which goes into overdrive during the manic phase of the disorder.
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4. Rapamycin: This antibiotic, also called sirolimus, was first discovered in bacteria-laced soil from Easter Island in the seventies, and the FDA approved it in 1999 to prevent organ transplant rejection. Since then, researchers have found it effective in treating not one but two diseases: Autoimmune Lymphoproliferative Syndrome (ALPS), in which the body produces too many immune cells called lymphocytes, and lymphangioleiomyomatosis, a rare lung disease.
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5. Lomitapide: Intended to lower cholesterol and triglycerides, the FDA approved this drug to treat a rare genetic disorder that causes severe cholesterol problems called homozygous familial hypercholesterolemia last December.
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6. Pentostatin: This drug was created as a chemotherapy for specific types of leukemia. It was tested first in T-cell-related leukemias, which didn’t respond to the drug. But later NIH’s National Cancer Institute discovered that the drug was successful in treating a rare leukemia that is B-cell related, called Hairy Cell Leukemia.
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7. Sodium nitrite: This salt was first developed as an antidote to cyanide poisoning and, unrelated to medicine, it’s also used to cure meat. The National Heart, Lung, and Blood Institute is currently recruiting participants for a sodium nitrite clinical trial, in which the drug will be tested as a treatment for the chronic leg ulcers associated with sickle cell and other blood disorders.

Interested in more thoughts on how we can change the long, clunky process of testing pharmaceuticals? Watch these 5 TED Talks with fascinating ideas for medical research »