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Want to help heal the world? Start by sharing your health data

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What can you do help yourself, family, friends — and why not everyone? — to heal from and perhaps avoid deadly diseases? Why not share your personal health data to help a new multi-industry, collaborative effort to improve therapies?

Georgia with type

That’s the drive behind a new website, MeForYou.org, part of a University of California at San Francisco (UCSF) awareness campaign around precision medicine, the topic of the OME Summit last week.

UCSF Chancellor and TEDMED 2013 speaker Susan Desmond-Hellmann is a leader in advancing precision medicine, which calls for disease treatment that integrates genomic knowledge and other molecular research with input from patients’ health records, along with social and environmental data.

Ideally, precision medicine will lead to improved diagnosing and customized treatment based on personal genetics, and include a feedback loop to monitor effectiveness. UCSF already has a number of related initiatives on board, including:

  • A study on fronto-temporal dementia – more common in people under age 60 than Alzheimer’s disease – that is integrating all known data on the disease, with the goal of homing in on the genetic and molecular causes;
  • A large-scale breast cancer project that tracks patients’ progress during a clinical trial, charts it against population-based data and adapts therapy accordingly;
  • A collaboration with Kaiser Permanente that has resulted in the world’s largest and most diverse genetic database, tied to environmental exposures, telomere lengths and in some cases decades of electronic health records.

David Arrington, UCSF spokesperson, says MeForYou aims to drive conversation about something we all own — individual genetic and health data — and someone we know whom might benefit from it. Now in its initial phase, the campaign simply asks users, “What can you do?” prompting them to share their photo and dedicate their efforts to the health of one or more people.

“Never before in history have we had the right convergence of infrastructure, computer power and understanding of biology,” Arrington says, “and now we need to change the social contract. We’re trying to put a new thought into the public consciousness of, medically speaking, what can they do for someone else? What can I do to take a meaningful step?  And then, If I can pledge to help this person, why not the general population?”

Screen Shot 2013-05-10 at 8.37.19 AM

UCSF is still working to gather partners in the effort, which could include advocacy groups, non-profits, biomed and health tech companies and insurers, and to work out logistics on how to scale it up, ideally to a global level. Still, most integral to its success are contributors, who will receive email updates about the initiative as it progresses about how to go about contributing data.

“This is a grassroots effort. Our hope is that people will start showing up to their checkups being well-informed, and say, “I see you’re entering something in my medical records.  Where’s that going?  How is it helping my family and my kids?” Arrington says.

Visit MeForYou.org for more information and to make a dedication.

Related: TEDMED speakers Peggy Hamburg and Francis Collins discuss precision medicine with Desmond-Hellmann.

 

TEDMED 2013 in Doodles and Song

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How much information can you pack into one entertaining doodle?

More than you can imagine. Check out how Discovery Doodles captured each TEDMED 2013 talk in enlightening and entertaining drawings. Which is your favorite?

Our recommendation? Listen to this wondrous song by Kishi Bashi, singer-songwriter and composer who performed at TEDMED 2013, while you browse the Doodles:

Browse the Doodles below:

TEDMED 2013 Session Recap Doodles

TEDMED Day 4 – Harnessing Our Data, and Motorcycles, to Work for Us

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By Medgadget Editors

The final day of last week’s TEDMED 2013 consisted of two sessions, tastefully interspersed with self-reflection and humor by the curators. The first session, “Hiding in Plain Sight,” looked forward to new developments in technology, and data analysis in particular, that can give us new capabilities in healthcare.

Computational physicist Mariano Vázquez discussed his work in creating a “computational world” with a supercomputer in a 400 year old church, and described techniques for envisioning these worlds to provide new ways of looking at the existing masses of data and put it in context in order to lead to new advances.

Laura Deming Photo:Jerod Harris/TEDMED

Parallel processing supercomputer algorithms have been created over the years to model all sorts of things, and many of those can be transferred to model the human body. He believes that one day we’ll be running simulations on individual patients to predict the future of disease using small computers that are as powerful as today’s supercomputers.

Isaac Kohane, the co-director of Harvard Medical School’s Center for Biomedical Informatics, described his work on using computational techniques to provide pharmacovigilance, or constant monitoring of the effects of new treatments within populations to determine if they are providing the help we expect them to for patients, as well as ensuring that they are not harming patients.

He calls this functional genomics and likens to the way weather patterns are interpreted to predict the paths of hurricanes and potential tornado activity. By monitoring patient data on a larger scale we can not only track infectious disease, but be able to spot unnoticed side effects of drugs and medical devices. His takeaway point is that we should “Make Our Data Count For Us.”

Next, Steve Gullans explained that up to 70% of cancer patients do not get the right doses of their medications and that in the quest to avoid high toxicity for a small subset of patients, we often do not give sufficient amounts of medications. This often leads us to give just enough to produce harmful side-effects, but too often not enough to help. He called for efforts to provide more personalized dosing of medications.

As one option to improve drug dosing for patients, he suggests personalized testing of toxicity in levels similar to what professional athletes undergo to screen for performance enhancing drugs.

Ending the session was Laura Deming, who began her talk with a deceptively simple statement: “We are changing the way living things relate in time” and continued to explain how work in the biomedical sciences managed to radically increase the lifespan and health of laboratory animals and essentially changed their nature.

The final session of TEDMED 2013 was titled “Coming Together” and was focused on the application of new ideas and technology, as well as a summary of the entire 4 days of exploration and learning. The session began with Eli Beer, the founder of United Hatzalah, roaring onto the stage and stating: “This is the Ambucycle! This is fastest way to reach any medical emergency. This bike has a defibrillator, an oxygen tank, and just about everything a traditional ambulance has except a bed.” Moreover, Beer described his efforts to make emergency medical care faster and more effective in Israel, and spreading that concept to the rest of the world.

Eli Beer

United Hatzalah harnesses the efforts of thousands of volunteers to create “medical flashmobs” that can respond to emergencies faster than ambulances. Once a call comes into an emergency call center, volunteers who live around the area where someone needs assistance get information about the situation and immediately run to help out. They are trained in CPR and can help stabilize a patient before the ambulance arrives. Last year United Hatzalah responded to over 200,000 emergencies including 40,000 life threatening ones. The only thing we’re wondering is, why doesn’t this exist everywhere?

Victor Wang then reflected on the fact that “despite all these advances in communications, grandmother is lonely” and noted the need not just for technology, but also for human connection to improve caretaking in the 21st century. He discussed how we can look for ways to help new tools meet old needs and showed off robotic technology that can help bridge thousands of miles and address the developing problem of an aging population.

Raghava KK Photo: Jerod Harris/TEDMED

Artist Raghava KK, then asked all to be as expansive and open in gaining and sharing new knowledge, noting that “you can’t censor your thoughts” and that “art and science are two sides of the same body.” Then Erin Barker & Ben Lillie poked some gentle fun at TEDMED, explaining that the sight of “grown men in bean bag chairs” can be a frightening experience. Turning to a spiritual viewpoint, Richard Payne called attendees to recognize the “power of story and power of human imagination,” and to search for the “wisdom to use these gifts wisely” in healthcare. Storytellers Sara Peters and Peter Aguero masterfully gave a patient’s (and their partner’s) point of view of living with epilepsy, and the ordeal of having it diagnosed after days of waiting in the hospital for a seizure to happen while attached to diagnostic equipment. Finally, a wrap up was provided by Jay Walker and TEDMED 2013 was brought to a close.

We’d like to congratulate the organizers of TEDMED for another spectacular conference and continuing to foster a community devoted to improving the health and healthcare of people around the world.

Reporting by Medgadget guest blogger Mike Moore and editor Gene Ostrovsky.  Reprinted with permission.

TEDMED 2013 Day 3: From Scuba Diving Wheelchair to Death Over Dinner

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By Medgadget Editors

Day three of TEDMED 2013 kicked off with “Session X,” which was a special session focusing on innovation and entrepreneurship, and consisted of a spirited panel discussion of two hot topics. During the first half of the session, Marleece Barber, Jennifer Kurkoski, Rick Valencia, Geeta Nayyar and Jeff DeGraff participated in a discussion titled “Every Company is a Healthcare Company: Innovating From the Outside In,” which offered insights into integrating good healthcare practices at a basic level.

Photo: Jarod Harris/TEDMED

From Barber’s observation, “If we can put a man on the moon, why can’t we put rocket scientists’ butts on bicycles?” to Kurkoski’s thoughts on creating work environments that help employees make good choices, there was consensus that meaningful changes can be made without burdensome mandates on employees. As an example, Kurkoski pointed to Google’s efforts of making it easy to subconsciously choose fruit as a snack over candy at the company’s cafeterias. The second half of the session had Grant Verstandig, Giovanni Colella, Nina Nashif, Michael Weintraub and Juan Enriquez tackling the topic of “Shifting the Curve from Start to Scale to Exit: Lessons from the Trajectory of Innovation,” which offered observations of investors and experienced entrepreneurs on starting and maintaining companies from innovation to maturity.

The next session, “Going Farther while Staying Closer,” opened with an innovative musical program by the Washington Conservatory. Susan Desmond-Hellmann, Chancellor of the University of California, San Francisco discussed her vision of patient centered healthcare. Roni Zeiger former Chief Health Strategist for Google and now CEO of Smart Patients, talked of creating systems that allow patients to collaborate in a more equal footing with physicians and the health care system. Ramesh Raskar of the MIT Media Lab demonstrated two of his projects that use capabilities of smartphones to measure vision and prescribe corrective lenses, as well as demonstrating fundoscopic examinations using a brand new approach (look more on that from Medgadget in the coming days). Christopher J.L. Murray, Director of the Institute for Health Metrics and Evaluation (IHME) at the University of Washington, shared his work collecting and providing data analysis tools for evaluating the global burden of disease. Larry Brilliant rounded off the session with a presentation on dealing with pandemics and the possibility of eliminating them altogether.

Photo: Jarod Harris/TEDMED

The third session, “Thinking Outside the (Check) Box,” included Sue Austin showing off her work as an artist performing underwater in her scuba wheelchair. She claimed to be, though she’s paralyzed in the legs, the most mobile person at TEDMED. Considering what she does underwater, that claim is not as outlandish as one might suspect. Jessica Richman presented uBiome, the world’s largest successful citizen science project and her vision that citizen science can be performed at the Nobel Prize level. As she stated, “We can put those anecdotes together in a structured way and create data, and that’s science!”

Elazer Edelman discussed the perils of the explosion of knowledge and how this can actually limit the integration of disparate fields of work together. Following him, Ryan Panchadsaram shared his ideas for the uses of data visualization in public policy. Salvatore Iaconesi followed by describing how his community, both in person and online, helped him deal with his brain cancer diagnosis and say “Hey Cancer! You’re not all there is to me!” Finally, Andrew Solomon offered his ideas on the merging of illness, identity, and relationships, and his view that relationships of all types help us deal with illness. Take away: “I don’t subscribe to a subtractive model of love. I subscribe to an additive model of love.”

The final session of the day, an amazing and challenging session, “Welcoming Death Into Life,” dealt with end of life issues. From Charity Tillemann-Dick’s experience with pulmonary hypertension and lung transplants, including sharing her beautiful soprano voice coming from her third set of lungs, to John Kheir describing how the death of a child spurred him to create medical innovation, this session invited us to think about mortality with curiosity and even a bit of humorAmanda Bennett discussed how the medical system does a poor job helping patients avoid denial and the reality of death, and Kelli Swazey described how the practices of other cultures can help us find new ways of dealing with death. The centerpiece of the session was Michael Hebb’s “Death over Dinner” and how he thought of and created a new ritual that allows family and friends to discuss death in a new, innovative and non-threatening way.

This post originally appeared on Medgadget.com.

TEDMED Explores Death As Dinner Conversation

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Death. It’s not typically considered polite dinner conversation, but it was the topic of choice at seven dinners with TEDMED delegates and an assortment of grandparents, parents, close friends, co-workers, children and strangers.

Let's Have Dinner and Talk About Death

The dinners are part of a new project, Let’s Have Dinner and Talk about Death, which encourages people to “discuss the beauty, mystery, fears, hopes, and challenges of end of life decision making” in a setting that is comfortable and comforting—over dinner.

Chef Michael Hebb, a TEDMED 2013 speaker and founder of the project, urges families to have these discussions now, rather than waiting for a critical, life-threatening situation when emotions are high and time is short.

A New Yorker article from 2010, one of the three pieces of pre-dinner “homework” for TEDMED dinner attendees, reported on a national Coping with Cancer study showing that terminally ill cancer patients who received intensive care had a substantially worse quality of life in their last week than those who received no such interventions.

Some studies have found that the missing ingredient that often stands between a patient and a quality end of life is simply talking about goals and ideas for what end of life should be like before the time comes.

Other recommended listening before the dinners included a poignant—sometimes funny, sometimes heart-wrenching—interview with comedian Tig Notaro, who broke all social mores and opened up a critical dialogue by sharing her experience losing her mother and receiving a fatal cancer diagnosis as part of a live comedy standup act.

To help that difficult discussion along, Hebb offered a framework for the discussion, which others could use to guide their talks with family as well:
  1. Start with a sense of gratitude. Think of someone who is no longer with us, and how they made a difference in your life.
  2. Share the most powerful end of life experience you have witnessed—whether from up close or afar.
  3. What do your final days look like? Who is with you? Where are you? (“Are you at home, are you in a hospital, are you on safari in Kenya aloft in a hot air balloon with vintage champagne on ice?”)

For more about the project, visit www.deathoverdinner.org and follow #deathoverdinner.

The dinners followed a moving set of talks at TEDMED all focused on opening up an honest dialogue about death. Charity Tillemann-Dick, an accomplished opera singer who happens to be on her third set of lungs, urged the crowd to find immortality, in a way, by giving new life at death — through organ donation. 

Pulitzer Prize-winning journalist and author of The Cost of Hope, Amanda Bennett, recounted her experience with her husband’s last weeks and months. She said she and her husband truly believed that despite his diagnosis of severe bowel disease, if they worked hard enough, conducted enough research and found the right treatments — that her husband would never have to die. But Bennett proposed that quest represents not denial, but a powerful form of hope. And just maybe that hope serves a critical purpose in the struggle to comprehend and survive, so to speak, death.

This cultural approach to resisting death may not be unique, but it’s also not universal. Anthropologist Kelli Swazey offered a glimpse into the culture of the Torajan tribesmen, who spend their entire lives preparing for their deaths. Their comfort with death is so complete that they continue to live with the dead bodies of their expired kin during a transitional period before they can raise the money for mandatory elaborate burial rituals.

Michael Hebb closed the evening by leading attendees in a toast to death, summoning a feeling of gratitude for those we have lost.

TEDMED 2013 Day 2 – Information Density of Stool and a Dance to Study Cellular Interactions

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By Medgadget Editors

The second day of TEDMED 2013 began with the curator, Jay Walker, providing a recap of the first day, which set the stage for the first session of the day: “How Can Big Data Become Real Wisdom?” This session was the most technologically focused of the day.

Larry Smarr at TEDMED 2013 TEDMED 2013 Day 2 – Information Density of Stool and a Dance to Study Cellular InteractionsThis session started with computer scientist Larry Smarr, an advocate of personalized medicine, who noted that applying changes to the data we already collect can give us a new vision. For example, by applying data visualization techniques we can make the data “organ centric” in ways that clinicians traditionally do not expect.

As he pointed out, “stool is information rich media” that the typical clinician will usually not think of using to help diagnose or treat a condition. Smarr had amazing computer resources at his disposal, and when he combined this information with a detailed description of data and symptoms, he obtained very specific answers. As he worked on his own medical condition, an inflammatory bowel disease, it occurred to him that medicine can and should be this individualized for all.

Deborah Estrin 2 TEDMED 2013 Day 2 – Information Density of Stool and a Dance to Study Cellular InteractionsDeborah Estrin discussed the use of the large amounts of data we generate to create a “Digital Social Pulse” that can be used by individuals to get feedback about their health, as well as by health care providers to assist in the care of patients. This realization came to her painfully, realizing after her father’s death that his patterns of phone calling and emailing changed drastically before anyone knew there was a deep fundamental problem.

She noted that we analyze data but do not bring it back to the person who generated that data and there is a lot that we can learn from our digital data, just like bread crumbs that lead to their source. She sees real potential for enhancing healthcare with personalized data insights so that “we don’t have to just rely on our subjective memory.”

Elizabeth Marincola, publisher of Science News, discussed the concept that public dissemination of knowledge can be profitable even in an open access environment, which is essential because in her view open access publishing goes to the heart of science. Then, Max Little, applied mathematician, spoke on the “The Unreasonable Effectiveness of Math” and how we can build this into our approaches to data.

Amy Abernethy TEDMED 2013 Day 2 – Information Density of Stool and a Dance to Study Cellular InteractionsThe final speaker for the session was Amy Abernathy, oncologist and palliative medicine physician. She shared the story of a patient, who had a “special treasure” to share…her data. Abernathy noted that our ability to personalize medicine is within our grasp, but the irony is that at the bedside we have trouble applying all this information to an individual, we need big data, but we also need the ability to use it. From her patient, she learned some key “pearls” about data: First, the patient needs to own their data, then patients should be able to control how their data is shared and used (to include the ability to rescind access if needed). Finally the data needs to be portable, and to be able to be used across a variety of settings and uses. She closed with the observation that “data is a non-depletable resource” and we need to find ways to use it in many different ways.

The second session of the day was focused on “Translating the Untranslatable” and featured speakers like the Mayor of Oklahoma City, KC Mick Cornett, about transforming his community from one of the “fattest cities” in the country to one that’s relatively healthy. David Agus, author of “The End of Illness,” who spoke about his vision of cancer as a disease. Sue Austin shared an amazing video of her scuba diving in her wheelchair that was turned into a miniature submarine. For many, a highlight of the session was a talk by Sally Okun, the first nurse to speak at TEDMED. She promoted the power of patient stories and how we need to capture them from the patient’s point of view, as well as the physician’s. Finally, the session closed with Richard Simmons who got the entire TEDMED audience moving with song, dance, and his message of “counting your blessings every day.”

The next session focused on “Shifting the Patterns of Power” and featured speakers like entrepreneur Jonathan Bush, urban farming advocate Ashley Atkinson, medical researcher H. Shaw Warren, mathematician Max Little, and closed with an amazing talk by Peter Attia, a physician who shared an amazing story of his growth as a person and as a physician.

The final session of the day addressed “What Happens When You Mix Up The Models” and began with the announcement of a new TEDMED initiative, Lab TV, by Jay Walker and Francis Collins, Director of the National Institutes of Health. This project will enable researchers to share in real time their work, and perhaps even assist in the research.

Lab TV will try to get curious and scientifically minded people to interview researchers, go into labs, and provide a first person point of view of the latest scientific advancements, with the final goal of getting the public educated about what’s under development and to give a chance to researchers to profile their work to a wider audience.

Next in the session, Mike Pazin of the National Human Genome Research Institute spoke about his project to take the raw human genome data and build a disease encyclopedia to make the data useful. He made the observation that this type of research is possible only because new devices have allowed individual genomes to be analyzed cheaper than ever before. Then Gary Slutkin, epidemiologist, discussed his work in using epidemiology to look at violence as a public health problem.

David Odde and Black Label Movement TEDMED 2013 Day 2 – Information Density of Stool and a Dance to Study Cellular InteractionsDavid Odde of the University of Minnesota in particular had a very interesting approach to the use of art, and dance in particular, to study how cells move and interact. As he was studying cellular activity, he talked to a dancer and demonstrated how the activity or body storming of the dancers can be used as a method of rapid prototyping of various types of cellular activity, including the migration of tumor cells, microtubule activity, and other cellular behaviors.

After this initial effort, the concept of “body storming” became more developed, with the addition of boundaries, groups, and permitted moves by dancers to more closely model actual cellular activity under various conditions. This effort directly led to better computer models and observations of cellular activity.

After performances by the The Manzari Brothers and David Odde & Black Label Movement, Zubin Damania, of ZDoggMD fame, addressed his plans to create new models of primary health care.

Reporting by Medgadget guest blogger Mike Moore and editor Gene Ostrovsky. This post originally appeared on Medgadget.com. Photos by Jerod Harris.

Nurture Introduces Patient-Friendly Exam Room Design at TEDMED

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If a healthcare exam room looks more like a living room, would it help a patient to relax?  To communicate more freely with a clinician?

Nurture by Steelcase is testing a prototype of a new exam room at TEDMED 2013. The company developed it as an accompaniment to the Smartphone Physical, a checkup using an array of smartphone powered tech.

Nurture's "Exam Room of the Future"

The space is designed to provide an increasingly comfortable and patient-centered experience, along with a sense of familiarity. The room includes:

An Empath chair in place of an exam table. “The goal is to have the patient in an upright, more dignified posture. This allows him or her to see eye-to-eye with a physician and and have a more balanced relationship,” says Jason Vanderground, Nurture’s Manager of Marketing Communications. “The idea was to try to get patients to take a more proactive role.  It’s not just a patient encounter.  It becomes a real conversation,” he says.

An unobtrusive Pocket computer table, so a clinical can take notes electronically while still remaining close to a patient.

A large flat-screen display, part a line called Regard, that either the clinician or patient can use to share relevant data.

Three major pieces of furniture, the patient chair, pocket desk and a physician stool – all on the same level as the patient chair to facilitate communication – are on rollers so they can be easily reshuffled. The entire space is ideally as uncluttered as possible, for a calming effect, Vanderground says.

Jerod Harris/TEDMED

Margaret Alrutz,  Director of Strategic Marketing & Experience Design at Nurture, says the room takes cues from cultural changes at large.

“Healthcare changes as people’s experience of the world starts to change, and one area that’s driving things now is retail. For example, a consumer may think, ‘I can get movies and meals at home anytime I want, but I get to have a physical maybe once a year.  It takes a long time and it’s uncomfortable,” she says.

With the glut of on-demand consumer technology, though, including health apps like the those in the Smartphone Physical, the new expectation is, “I can participate in healthcare and not be told what to do,” Alrutz says.

However, she added, “We may not yet have the social clues to navigate this scenario. So can we take these cues that are already familiar, like sitting in an easy chair, as ways to signal how to interact?

“When a patient walks into a room and sees an easy chair and a TV screen, they may think, ‘I know how to do this,’ ” Alrutz says.

TEDMED Partners Draw on Innovative Technologies and Innate Knowledge to Move Fields Forward

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The Hive at TEDMED 2013 is designed to be a petri dish for innovation, both the kind that flows from new technologies — a Hubble telescope to examine your eyes, anyone? — and that which emerges from insight and cross-disciplinary collaboration.

“There’s nothing more complex than the brain,” said Husseini Manji, M.D., Global Head of Neuroscience for Johnson & Johnson (J&J), which created a Hive space dedicated to exploring diseases of the brain. Manji shared some of the challenges of treating brain diseases. Alzheimers, for example, is 100 percent incurable and 100 percent fatal. With a rapidly aging population, “this will be catastrophic, unless we can learn how to slow or prevent its progression,” Manji says. On the other end of the age spectrum, Manji calls mental illnesses such as schizophrenia and severe depression “a chronic disease of the young,” because they usually emerge in a person’s early 20′s and stay with them their entire life.

Part of the goal of the space is to raise awareness that mental illnesses are a result of neurochemistry. “Asking someone with severe depression to be more positive and exercise and just feel better is like asking someone with diabetes to make their pancreas work better,” Manji said.

Photo: Jerod Harris/TEDMED

The space showcases a 3D brain model that demonstrates brain activity in the form of electric signals in different parts of the brain, as affected by Alzheimer’s, mood disorders, schizophrenia, and chronic pain. Glove simulators, special glasses and a headset that makes it hard to hear help give participants a window into a patient’s experience of dementia.

J&J’s space also features early research on treating age-related macular degeneration, a disease that is currently incurable. Macular degeneration is the leading cause of blindness in adults age 50 and older in the developed world. New retinal imaging techniques draw on technology used in the Hubble Telescope, and could allow physicians to view the eye in such minute detail that they can see individual cells in the back of the eye. That technology, coupled with new non-invasive delivery techniques to deposit stem cells where they can replace previously damaged cells, have been tested on about 30 patients so far, and some 30 and 40 percent of these patients exhibited significant vision improvements that lasted for more than a year, in an early clinical trial.

Not that we can let our guards down. Chrispin Kambili, Global Medical Affairs Leader for Infectious Diseases at Janssen (a subsidiary of J&J), shared the history of tuberculosis (TB), which was nearly eradicated in the U.S. by the 1960′s. In the next decade, the United States was so optimistic about the decline in rates that it was decided to stop funding TB control programs. But then TB came back in a big way in the 1980s. “The AIDs epidemic, migration patterns, antibiotic resistance and the dismantling of the public health infrastructure” meant the country (and New York City in particular) was unable to deal with resurgence, which peaked in 1992, Kambili says. Since then, the rates in the United States have been reduced back down to levels where citizens will likely never know someone affected by TB again.

But the same cannot be said of developing countries. “Every 20 seconds someone dies of TB, though it’s a very treatable and in fact preventable disease,” said Kambili. “But what’s lacking is access to care, which has been difficult to implement on a global scale.” Another challenge is multi-drug resistance, which happens over time when patients aren’t treated in sufficient doses and bacteria evolves to resist common treatments. It’s a challenge, though, to get patients to get sufficient doses when they have to take medication for 18-24 months, and side effects include nausea, vomiting and even deafness. Janssen has developed a new drug, bedaquiline or SirturoTM, that studies show killed bacteria more quickly than a control group taking the standard regimen. FDA gave it accelerated approval in December.

Photo: Jerod Harris/TEDMED

Booz Allen Hamilton’s space leverages potential of a different kind — innate knowledge, insight and experience. That’s the motivation behind “design thinking,” an art and a process that attempts to gain deep insights into a person or a group’s unmet needs through an ethnographic approach to discovery. True design thinking involves having a user population keep journals, allowing researchers to observe and analyze everyday tasks and more. TEDMED Delegates will have the chance to be a part of a small-scale version of this process, as the “design thinkers” on site probe visitors with the question: “What does health mean to you?”

The key principals in the design thinking effort include: “Be empathetic. Put yourself in someone else’s shoes,” said Joe Garcia; and “Reframe the problem from a different lens,” said Patricia Kwong, both of Booz Allen. Kwong offers the example of the problem of MRI machines that were terrifying to pediatric patients. To help develop a solution, physicians put on a pair of knee pads, crouched down to kid-height, and looked at the machine from a child’s point of view. Only then did they come up with the idea to transform the hulk of the MRI machine into a significantly more inviting pirate ship.

Interestingly, the themes emerging from the design thinking discussions at TEDMED so far echo several of the 20 Great Challenges of health and medicine, including the role of the patient and managing chronic disease.

Progress achieved in the Great Challenges since last year’s conference catalyzed conversation in the Robert Wood Johnson Foundation (RWJF) space. After eight months of Google Hangouts, a robust online discussion, and carefully curated Storify collations, the entire TEDMED community has the opportunity to weigh in on where we go from here to conquer the 20 Great Challenges.

At the Whole Patient Care station, Challenge team member Blaire Sadler, Senior Fellow at the Institute for Healthcare Improvement, spoke with visitors about how the sub-specialization of medicine has led to each physician treating only an illness or body part, which results in a lack of care coordination and alienated patients. Sadler and his collaborators also wondered about the ideal environment in which a person can heal: “Why does a patient room have to be scary, austere and hospital-like? Why can’t it be home-like, peaceful and include art and music for positive distractions?”

Maybe one of the most interesting things about the RWJF space was the cross-sector dialogue it facilitated. For example, Suzanne Mintz, President/Co-founder at National Family Caregivers Association, stopped by the Causes of Sleep Deprivation station to share her take on why sleep is such a challenge for those who “can’t shut their heads off… when people are on high alert, it’s hard to come down,” noting that caregivers often are high on stress in addition to having additional responsibilities at night to care for a sick loved one.

Smartphone Physical Debuts at TEDMED 2013

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Hundreds of attendees have been lining up to receive a one-of-a-kind “smartphone physical” at TEDMED.

The futuristic checkup, which generally takes under about 10 minutes and is entirely powered by smartphone-based devices, was developed by Johns Hopkins medical student and Medgadget editor Shiv Gaglani, in tandem with Nurture by Steelcase.  It includes nine quantitative and qualitative measures from body analysis, blood pressure and lung function measurement to carotid artery visualization.

Mark Wilcox, first-year medical student at Johns Hopkins, uses a Withings blood pressure monitor with TEDMED Delegate Anita Samarth.

Data collected from participants will be uploaded for a big-picture look at the health of the TEDMED community. Many who had the checkup said it helped them visualize their health status and improved their understanding of the process.

“You can see exactly what the doctor saw,” said Laura Philips, CEO of WellGen, Inc., based in New York. “You’re looking at the blood vessels in your own eye and the doctor is telling you what she’s seeing. All of a sudden you know what they’ve been looking for all these years.”

“It does help you connect and give context to all that information. Not just from a medical background, but also as a human experience. It engages you in a new way. How do you make sense of your own health data?” said Stacy McCarthy, President of San Francisco Bay-based Learning Design Network, Inc.

The checkups were conducted in an “Exam Room of the Future,” developed by Nurture, who also featured a “Social Mind Map” next door where participants could record brief immediate reactions to the physical. They also scribbled comments about their last traditional checkup, which ranged from “Took a half-day” and “totally unnecessary” to simply, “$300.”