An Extraordinary Out-of-Body Journey

In her TEDMED 2014 talk, photographer Kitra Cahana shared a new visual language accompanying the extraordinary story of her father’s severe brainstem stroke, a catastrophe that they transformed into an inspiring and imaginative spiritual journey. She spoke with us via email about her talk and her father’s progress.

What motivated you to speak at TEDMED?

It’s very difficult to express the sublime and the surreal in words and photographs. I wanted to attempt to communicate all that my family had experienced in the summer of 2011 – my father’s brain stem stroke, and the profound spiritual awakening that followed – with others. When my father first had his stroke, I wrote down these words, and whispered them to him when I first came to his bedside: “We only ever needed one pair of hands, two legs, a respiratory system to keep the world afloat between us.” This became my mantra. We can sustain ourselves through each other. This is what my father taught us; he said that all who came into his room of healing should expect to be healed themselves. Healing has to be mutual.

Kitra Cahana at TEDMED 2014. Photo: TEDMED/Sandy Huffaker

Kitra Cahana at TEDMED 2014. Photo: TEDMED

The stroke ruptured my reality as well as his. In those initial months, so devoted to his limp body and to allowing him to communicate all that was bursting to come out from within, I saw sides of myself I never knew existed. I would have loved for him to have spoken at TEDMED himself. But as in the hospital, where my mother, sisters, brother and I acted as his mouthpiece, so too do we continue to act in that capacity, sharing his words and his Torah with others.

Why does this talk matter now? What impact do you hope the talk will have?

To me, this talk should be timeless. In fact, part of my father’s message is that he hopes others will step outside of the space-time hustle and bustle that many of us are so used to. He experiences life in a kind of slow-time (that’s what he’s called it), watching with curiosity as his body reawakens tingle by tingle, twitch by twitch. He spent and continues to spend hours alone with himself. That space of aloneness with his thoughts is not a place of anxiety, but a place of joy and introspection.

I hope that others get a sense of this slow-space-time, where you exist only with yourself, with those other humans that you are intimate with, and – my father would also say – with G-d. I tried to recreate this kind of in-betweenness (in between the inside and the outside, heaven and earth, body and mind) in the video series and photographs that I have been working on and that I presented in the TEDMED talk.

What kind of meaningful or surprising connections did you make at TEDMED?

I met a wonderful woman at TEDMED who runs a high-end rehabilitation center in Boca Raton, Dr. Lisa Corsa. Our chance encounter at the coat check turned into a half-hour consultation, wherein she reaffirmed our family’s sense of what intensive rehabilitation should look like. A body that has had every system affected as severely as my father’s needs hours of attention each day if there’s any intention for it to make functional progress. A body that doesn’t move hardens; it stiffens and withers away.

We have a wonderful circle of volunteers who give so much of themselves, but it’s not enough. Dr. Corsa helped me get a sense of how far we have to go to advocate and fundraise for my father to receive the minimum amount of proper care and attention. He’s currently living in an institution with limited human resources, and as a result we are only able to provide limited access to physiotherapists each week. She affirmed my resolve to fight for my father’s right to basic daily movement and to seek the funds for intensive physiotherapy, so that he can eventually move back home.

Please share anything else you wish you could have included in your talk.

Since my father’s stroke, I have become involved in a global community of people who have experienced brain stem strokes, either personally or on the part of a loved one. They are either still fully locked-in, or have since made great progress, including some partial to full recoveries. We share and compare our experiences online.

So many of those who have experienced being locked-in were written off too early. Their families were told to expect very little. As a result, they did not receive proper rehabilitation therapies, nor were their bodies moved on a daily basis to maintain a minimum quality of comfort and life. I’ve seen health care professionals refuse to address the locked-in patient directly, speaking about him or her in the third person, insensitive to the fact that the person is still completely conscious and able to communicate. We struggle every day to sensitize health care professionals and institutions.

Healing is taxing. But what is even more taxing is trying to heal in systems and institutions that drain the already low reserves of patients and their support systems. My father was able to have the spiritual experience that he had because he had a family and a congregation that preserved him in his role as father, husband and rabbi and advocated for him when he wasn’t able to.

How sleep deep cleans your brain

Jeffrey Iliff at TEDMED 2014. Photo: TEDMED/Sandy Huffaker

Jeffrey Iliff at TEDMED 2014. Photo: TEDMED/Sandy Huffaker

 

In his TEDMED 2014 talk, neuroscientist Jeffrey Iliff illuminated a newly discovered, critical function of the brain during sleep: a natural cleansing system that keeps toxic proteins at bay.  We spoke to him via email about his talk.

What motivated you to speak at TEDMED?

TEDMED offered the unique opportunity to tell the story of our research – not just its facts, but also its story. As a neuroscientist, I go to the lab every day expecting to see something new within the brain, its pieces, processes, and the systems that comprise it that no one has ever seen before. What we find within the brain – its simplicity, minimalism, functionality, and its beauty – are a continuous source of wonder to me. In the methods, results, and careful interpretation of our findings, this wonder can easily be distilled. When the outside world looks in at our work, they may only see cells, blood, water, and so many solutes; not the beauty I see through the eyepieces of a microscope. TEDMED gave me the chance to tell the story of our work as we experience it, as the story that it is.

Why does this talk matter now? What impact do you hope the talk will have?

First, I think that it is a subject to which every person can relate. Each of us who is in school, works long hours at a job, or has kids to keep them up when they’re sick, deals with the inescapable fact that sleep is necessary for our brains to work correctly. Learning that parts of the way our brains work can make intuitive sense is comforting, and makes our brains seem a little less like these strange alien machines that no one can really understand.

I think that the research itself is timely, as well. An increasing number of clinical studies have begun to link such seemingly disparate processes as sleep, neurodegenerative disease, cardiovascular disease, brain injury and others. The science that we describe, and that is the subject of my talk, is fundamental to the basic function of the brain and may help to explain many of these puzzling associations. My hope is that my TEDMED talk will spur people’s imaginations and encourage them to dive headfirst into these questions and, in doing so, drive the field forward far beyond these small contributions that we’ve made.

What kind of meaningful or surprising connections did you make at TEDMED?

During the conference, I was approached by several people who were attending TEDMED for their own professional reasons, but who had also dealt – either personally or within their immediate families – with conditions that are likely impacted by the biology that we are studying. For those of us who are scientists, but not physicians, it is incredibly easy to view our work academically, to equate progress with papers and grants, and to view treatments as ideas and hypotheses to be tested. To an extent, this is completely appropriate. But, I was reminded that, when I talk about “Alzheimer’s patients” in a scientific talk, those words stand for millions of mothers and fathers, grandfathers and grandmothers who live with this disease every day – each loved and missed as they slip slowly away. In the face of this reality, the thin replies of “We don’t know yet,” “Here’s what we think is happening,” or “Here’s something we’re testing in our mice” seem hollow and inadequate. It was a stark reminder to focus not only on what, but also whom we are trying to cure with all of this amazing science.

A chorus of support for those struggling with mental illness

Entrepreneur Jen Hyatt, founder and CEO of Big White Wall, an online mental health support and treatment platform, talked to the TEDMED 2014 audience about how social networks can provide healing help to those who feel isolated in their struggles with mental illness. We spoke with her via email about her talk.

What motivated you to speak at TEDMED?

TEDMED’s global reach presents an unparalleled opportunity to “converse with the world.” TEDMED’s ethos, the ability to share knowledge and offbeat thinking that creates surprising sparks between innovators and disruptors from across the globe, is very dear to my heart. Focusing on the people who are creating new, or even strange or unusual, speaks to the greatest challenges facing health care offers the opportunity for transforming moribund systems. Being part of that, sharing knowledge and ideas, was a real privilege. So my message, as part of that, is that the economic and human cost of poor mental health is tragic in proportion, yet has a digital and human sized solution.

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Jen Hyatt at TEDMED 2014 Photo: TEDMED/Sandy Huffaker

Why does this talk matter now? What impact do you hope the talk will have?

Conventional methods of addressing poor mental health cannot meet the volume of need. We see this crisis in provision – lack of treatment, barriers to access, high costs and the pain caused by a lack of support for mental health – across the whole world. In my TEDMED talk, I showed that the human need for connection and community is thousands of years old. Yet it’s only now, with the growth of digital technology and online social networks, that we have the potential to truly transform mental health care with the support of online communities and a broad choice of support and recovery tools, so no one has to struggle alone. We need to shift the healthcare journey from one where people are passive and isolated to one where they are active and supported.

What is the legacy you want to leave?

An emotionally literate world, in which there is no more mental health stigma, and no one left struggling without help. Every human being should have one-click access to support and recovery tools for improving how they are feeling, and I hope that will be Big White Wall (BWW)’s legacy, and mine. A world in which your emotion is known without needing to speak it provides support that is integral to our lives.

Please share anything else you wish you could have included in your talk.

I wish I could have shared the vibrant images that our community members use to show their journeys from darkness to light, from struggle to recovery, and all the moments in between. Big White Wall centers on a shared, anonymous digital social space, supported 24/7 by professional staff. This center draws much of its strength from the power of peers – not trained professionals, but people just like you and me. Not necessarily the people who see themselves as leaders or helpers, but the struggling, the lost, the unhappy and the confused. I wish I could have showed a bit of their struggle, their strength and the amazing support they offer.

Watch Jen Hyatt’s TEDMED 2014 talk here.

A medical school in Cuba trains doctors to serve the world’s neediest

American journalist and Havana resident Gail Reed spoke at TEDMED 2014 about a Cuban medical school that trains doctors from low-income countries who pledge to serve communities like their own all over the world. She talked with TEDMED about the Latin American Medical School and its contributions to global health.

Why does this talk matter now? What impact do you hope it will have?

Ridden by Ebola today, other emerging infections tomorrow, and always by chronic diseases—our world needs strong health systems, staffed by well-trained and dedicated people. And their education must be the result of enlightened decisions from policymakers who put health first, learning from the likes of the Latin American Medical School to make these new health professionals the rule, not the exception. Now is the time for medical educators to make the changes needed to give us the kind of physicians we need. And to bring the profession into the movement for universal health care, bringing doctors to the forefront with other health workers. To walk the walk.

Gail Reed at TEDMED 2014

Gail Reed at TEDMED 2014 Photo: TEDMED/Sandy Huffaker

I hope that people seeing the talk will be inspired to act to support the Latin American Medical School graduates through our organization, MEDICC. I hope policymakers will take the School’s courageous experiment to heart, and then take another look at their budgets and find more for health and medical school scholarships; and that governments will find a way to employ these new doctors in the public health sector, in places where they are most needed. I hope the graduates will never ever wonder about their importance to global health, for they and others like them are vital to turning around our global health crisis, in which one billion people still have no health care—millions, even, in the USA. And finally, I hope we will recognize Cuba’s contribution to global health, including the nearly 500 nurses and doctors on the front lines against Ebola in West Africa, as an example of what is possible and as a challenge to others to do more. Today, Cuba has over 50,000 health professionals serving in 66 countries, 65% of them women. Since 1963, 77,000 of them have given their services—and some their lives—in Africa.

What motivated you to speak at TEDMED?

As a journalist in Cuba, I realized I was witnessing an extraordinary experiment in health solidarity with the world’s poorest people: The thousands of scholarships offered by Havana’s Latin American Medical School to students from low-income families in 123 countries, who pledge to serve in communities poor like their own. I was struck by the fact that a country, an institution, believed these young people could themselves be the answer to the call for doctors where there were none. And I was astounded, too, that this audacious experiment has remained essentially an untold story. Audacity is right at home on TEDMED’s stage, so it seemed the perfect opportunity. I also thought the TEDMED audience would ‘get it,’ the urgency and responsibility we all have to support these new doctors, who represent the potential of imagination when commitment drives it into bold action.

What is the legacy you want to leave?

The talk’s legacy is in the hands of thousands of young doctors continuing to graduate from the School in Havana, who are bringing health care to some of the world’s most vulnerable people. Their school and their example should remind us that this is one world, with one fate and one humanity, and that the odds are there to beat: Health for all is possible.  

Want to learn more about Gail and her efforts? Visit her speaker page on TEDMED.com.

TMIcon

What’s the new way to ask big questions in science?

Parkinson’s Voice Initiative founder and TEDMED 2013 speaker Max Little is an applied mathematician whose goal is to “see connections between subjects, not boundaries…to see how things are related, not how they are different” – which gives him an unusual perspective on how big data could change medicine. We  interviewed him via e-mail to find out more.

You’ve been working to discover the practical value of abstract patterns in various fields, with surprising results in areas as varied as diagnosing Parkinson’s disease over the phone to predicting the weather. Can you explain your approach?

Max Little

Max Little

As an applied mathematician, my training shows me patterns everywhere. Electricity flows like water in pipes, and flocks of birds behave like turbulent fluids. In my projects, I collate mathematical models from across disciplines, ignoring the assumptions of that discipline to a large extent, I put in overly simple models. I use artificial intelligence to throw out inaccurate models. And this approach of exploiting abstract patterns has been surprisingly successful.

For example, during my PhD I stumbled across the rather niche discipline of biomedical voice analysis, originating in 1940′s clinical work. With some new mathematical methods, and combining these with recent mathematics in artificial intelligence, I was able to make accurate medical predictions about voice problems. The clinician’s methods were not accurate. This sparked off research in detecting Parkinson’s disease from voice recordings – the basis of the Parkinson’s Voice Initiative.

But, success like this raises suspicions. So, with collaborators, I tried to make this approach fail. We assembled 30,000 data sets across a wide range of disciplines: exploration geophysics, finance, seismology, hydrology, astrophysics, space science, acoustics, biomedicine, molecular biology, meteorology and others. We wrote software for 9,000 mathematical models from a deep dive into the literature. We exhaustively applied each model to each data set.

When finished, a very revealing, big picture emerged. We found that many problems across the sciences could be accurately solved in this way. In many cases, the best models were not the ones that would be suggested by prevailing, disciplinary wisdom.

Are you doing other research that might have implications for clinical diagnosis?

Here is another example: There is a decades-old problem in biomedical engineering: automatically identifying epileptic seizures from EEG recordings. But, we found over 150 models, some exceedingly simple, each of which, alone, could detect seizures with high accuracy.

Empirical

This challenges quite a few assumptions – but it is not as if we are the first to find this. It happens often when new approaches to address old problems are attempted: for example, in obesity, a new, simple mathematical model revealed some surprising relationships about weight and diet.

You’ve also used fairly simple algorithms to successfully predict weather.

After my PhD, I teamed up with a hydrologist and an economist. We wanted to try weather forecasting using some fairly simple mathematics applied to rainfall data. Now, weather forecasting throws $10m-supercomputers and ranks of atmospheric scientists together, and they crunch the equations of the atmosphere to make predictions. So, competing against this Goliath with only historical data and a laptop would seem foolhardy.

But after two years of hard work, I came up with mathematics that, when fed with rainfall data, could make predictions often as accurate as weather supercomputers. We even discovered that models as simple as calculating the historical average rainfall, and using this as a forecast, were sometimes more accurate than supercomputers. We were all surprised. but this finding seems to line up with results that others have found in climate science: it is actually possible to make forecasts of future global temperatures using simple statistical models that are as accurate as far more complex, general circulation models relied upon by the Intergovernmental Panel on Climate Change.

Is this a new way of doing science?

If we divide science into three branches: experiment, theory and computer simulation, then what I am describing here doesn’t quite fit. These are not just simulations: the results are entirely reproducible with just the data and the mathematics. This approach mixes and matches models and data across disciplines, using recent advances in artificial intelligence.

The three branches of science. What happens when we add computational algorithms to the mix?

The three branches of science. What happens when we add computational algorithms to the mix?

I don’t know what to call this approach, but I’m not the only one doing it. The most enthusiastic proponents are computer scientists, who do something like this regularly in mass-scale video analysis competitions or one-off prizes financed by big pharma for molecular drug discovery as do statisticians working in forecasting.

In your TEDMED talk, you expressed concern that advances in science have stagnated. Can you explain?

Like many scientists, I’m concerned that science is becoming too fragmented. So many scientific papers are published each year that it is impossible to keep track of most new findings. Since most articles are never read, much new research has never been independently tested.

And, unfortunately, scientists are encouraged to ‘hyper-specialize’, working only in their narrow disciplines. It is alien to we applied mathematicians that a scientist who studies animal behavior might never read a scientific paper on fluid mechanics!  In isolation from each other, could they just be duplicating each other’s mistakes?

Max Little at TEDMED 2013

What can we do to create a more unified approach?

First of all, open up the data. There is far too much politics, bureaucracy and lack of vision in sharing data among researchers and the public. Sharing data is the key to eliminating the lack of reproducibility that is becoming a serious issue. Second, don’t pre-judge. We need to have a renewed commitment to radical impartiality. Too often, favoured theories, models, or data persist (sometimes for decades), putting whole disciplines at risk of missing the forest for the trees.

More collaboration would also greatly speed advances. Is first-to-publish attribution of scientific findings really that productive? I think of science as a collaborative journey of discovery, not a competition sport of lone geniuses and their teams.

Scientific theories that can withstand this “challenge” from other disciplines will have passed a very rigorous test. Not only will they be good explanatory theories, they will have practical, predictive power. And this is important because without this mixing of disciplinary knowledge, we will never know if science is really making progress, or merely rediscovering the same findings, time and again.

Follow Max Little @MaxALittle.

 

 

Can we paint a personal health picture from our daily digital traces?

We leave a long trail of digital breadcrumbs every day as we go about even the most mundane tasks: Answering e-mail; making phone calls; using GPS to find a post office; shopping for dinner; tracking our sleep and steps with a Fitbit.

Data collected from search engines, social networks, and mobile carriers, combined with smart apps, can turn these tracks into a continuous, real-time picture of our personal health, said Deborah Estrin, co-founder of the non-profit open software builder Open mHealth and a professor of Computer Science at Cornell Tech, speaking at TEDMED 2013 in April.

“I’m not taking about doing detailed medical diagnosis…replacing the communication  between you and your doctor and with your loved ones or even your own self-awareness. I’m talking about enhancing each of these with personalized, data-driven insights…such as early warning signs of a problem or gradual improvement in response to a treatment,” she said.

She continued, “I like to think of it as a digital social pulse, because it’s a single measure that I can look at over time that represents my well being, and social because it’s something I can selectively share with a small number of friends and family. Once we as patients can get access to our small traces — our small data — we’ll be able to fuel a new market of apps and services,” she said.

Though our daily behaviors are already monitored and analyzed extensively, the results are unavailable to users and there’s no vehicle to make them accessible, Estrin said in an interview today.

“There’s nothing lost by letting an individual have their data back, and having them do things that are useful with it,” she said. “It simply plays into having people manage their lives and their health and welfare. Imagine the utility that I will get out of an app that helps me figure out whether I’m taking supplements in an effective dose or not, or helps me monitor a my kid whose going away to college who has a complicated health issue.”

Though Estrin co-founded Open mHealth in 2011, the group is already working on a number of initiatives, including a web app called ClinVis that trends subjective units of depression (SUD) scores. Estrin is already building a coalition of service providers and app developers for this venture. She’ll meet with a few major phone and network service providers in a few weeks to start a smaller-level “virtual testbed” in New York City. Wikilife, a collaborative that seeks to anonymously collect and share health data to measure the health impact of lifestyle choices and nutritional habits, among other measures, is also considering implementing Open mHealth’s API, she said.

Some carriers are apprehensive about appearing to violate privacy regulations, Estrin acknowledges, but adds, “There is a lot of interest in making sure this is done securely, and receptiveness to the notion of personal data vaults within the cloud. I think that the minute we can prototype an initial viable product and a couple of feeds and let people come together and run some apps, we’ll see a lot of uptake,” she says.

The apps will be built on an open-source development platform, which dovetails with the project’s goal of shared knowledge.

“Part of the story of small data is having it happen in an open architecture content because you can then build upon each other’s skills. You’re not counting on any one vendor to build the system, and you get a very exciting Internet economy,” Estrin says.

Watch her talk at TEDMED 2013, and click here if you’re interested in a compilation of your own small data.

Deborah Estrin at TEDMED 2013

How did the world’s most quantified man diagnose his own illness?

We’re drowning in health information on all fronts with very little guidance on how to make sense of it. How can we go about finding clarity and seeing sensible patterns in a morass of data?

Larry Smarr, perhaps the world’s most-quantified man, chronicled his bodily input and output in minute detail for months. He used the resulting mountains of microbiotic data — and a supercomputer — to self-diagnose a gastrointestinal illness, much to the discomfort of his doctor, who told him, “that’s science, not medicine.”  Still, Smarr may well be the patient of the future. Watch him tell his tale at TEDMED 2013.

Larry Smarr at TEDMED 2013

David Agus: Why we don’t “get” cancer

With the recent news about Angelina Jolie’s double mastectomy due to a faulty gene, cancer prevention — and the lengths to which it should go — became an even hotter topic in healthcare, grabbing at least 15 minutes of frenzied public attention about genetic testing and breast cancer.

Jay Walker, left, with David Agus at TEDMED 2013. Photo: Jerod Harris/TEDMED

Jay Walker, left, with David Agus at TEDMED 2013. Photo: Jerod Harris/TEDMED

Cancer took center stage at TEDMED 2013, too, as physician and author David Agus joined TEDMED curator Jay Walker to explain, as Agus told us today, why “cancer is not something the body gets, it’s something the body does.”  In other words, most of us are living with cancerous cells at any given time; it’s our body’s environment that decides whether they will multiply and flourish into disease.

“Anglelina Jolie doesn’t have cancer, and the BRCA1 mutation doesn’t cause cancer. It makes your cells more susceptible to getting these mutations that cause cancer,” he said. “What this is telling us is that her body has a systems issue.”

Agus is in favor of widespread genetic testing, particularly in cases of a family history, but in context.

“We’re in favor of getting all the information we can to help make decisions. Not that everyone should go out and have preventive mastectomies; BRCA1 mutations only cause 5 to 10 percent of all breast cancers. This is a small piece of the puzzle of information, but it’s an important piece,” he says.

What testing can do for us, he says, is help influence daily behavior.

“We’re not good at thinking about tomorrow, we’re only good about thinking about today. So if knowing your information changes how you live your life — whether you’re sedentary, whether you smoke or not, what you eat, how much you sleep – it’s still a major win.”

Agus talked more about the issue on CBS Today and yesterday published an op-ed in the New York Times about the cost of a gene test. He spoke at TEDMED 2011 about redefining cancer.

Video: Rafael Yuste climbs the Everest of science

A complete map of our brain activity is the “Everest of science,” says Rafael Yuste, who helped conceive of Obama’s Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative as a first attempt at scaling it. (Click here for details of President Obama’s announcement.)

At TEDMED 2013, Yuste discussed why the initiative is critical to advancing neural knowledge.

Rafael Yuste at TEDMED 2013