The Hovalin: A real-time synesthesia translator

Written and submitted by Kaitlyn Hova

This guest blog post is by Kaitlyn Hova. Kaitlyn is a professional violinist, composer, full stack web developer, designer, neuroscientist, and core team member of Women Who Code. She is also a synesthete—which means her sensory perception is quite different from what most people experience. Kaitlyn spoke on the TEDMED stage in 2016, and you can watch her talk here.


Most people don’t expect their understanding of the senses to drastically change beyond what we learn in grade school: sight, smell, touch, taste, and hearing. I was 21 years old when I made the jarring discovery that none of my fellow students experienced vivid colors and shapes when they heard musical notes. At first, my classmates called this ability “weird”. Actually, I later learned the official term: “synesthesia”! Finding out that you physically experience the world in such a fundamentally different way can feel isolating. However, it turns out that 1 out of 23 people have some type of synesthesia. What if the study of this ability that was once thought to be “strange” is actually the study of the diversity of the average human sensory experience?

Matt and Kaitlyn Hova, co-founders of Hova Labs

I had always wanted to find a way to accurately convey my experience of seeing sound. I believed that if people could see a simulation of my synesthesia in real time they would be able to make the jump to understanding the nature of it. With this idea in mind, my husband Matt and I co-founded Hova Labs three years ago. One of our first projects was creating a real-time sound → color synesthesia translator violin. Imagine a guitar tuner, but instead of the tuner showing the note “C” it shows what I see when I hear the note “C”, which is the color red. Further, imagine that the brightness of the color is driven by the volume of the instrument being played. (I should be clear, the colors that I experience when I hear notes of music are an experience that is unique to me. If we both hear the note “C” and you see blue but I see red, neither of us is “wrong”, we simply have different associations in our brain.)

Creating a synesthesia-translating violin wasn’t easy—it took us a year and a half of prototyping. We could have easily just strapped LEDs on any violin but we had a VISION: a synesthesia translator glowing violin. First, in order to figure out how to drive the lights inside of our violin, I created a color-coded map of a piano. Additionally, we knew we wanted the violin holding the synesthesia-driven lights inside of it to be translucent, yet at the time (2014), such an instrument didn’t exist (or if it did, it was probably way too expensive). Determined to make our vision a reality, we decided to take our concept a step further. We created The Hovalin: our 3D printable acoustic violin.

Piano keys through the eyes and ears of synesthete Kaitlyn Hova

In October of 2015, we released the Hovalin, and we made it available for anyone to download online along with a short shopping list of materials and “how-to” build instructions. Since the launch, we’ve continued to improve the design. You can see me playing our v3.1 design in my TEDMED talk!

After launching the Hovalin, we soon realized that our project had the potential to be a lot larger than we originally thought. Though today’s music education programs are systematically underfunded, STEM (science, technology, engineering, and mathematics) grants are introducing 3D printers to kids at these same schools. We saw this as an opportunity: why not 3D print your music program?

Creating instruments with 3D printers is a solution that has never existed before. Today, all of the files are available to download for free at hovalin.com. If you have access to a consumer-level 3D printer, the total cost (including plastic, tuning pegs, strings, and bow) is $65. And this is just for one violin. With bulk purchases, we believe that this cost could be reduced drastically.

We already have a pilot program in Oakland, California, and we hope to expand to more schools around the country and the world. We believe that STEM programs can empower kids to solve their problems creatively while supporting the often under-funded music education programs in schools. We attribute our diverse backgrounds in music and tech to creating the Hovalin, and who knows what other great projects will come from kids that are given the chance to think creatively with STEM programs.

If you’re interested in learning more about Synesthesia, I encourage you to check out The Synesthesia Network. Also, you can check out more nerdy violin electronics in this blog post at Hova Labs.

The 21 Million

Written and submitted by Emtithal Mahmoud

This guest blog post is by Emtithal “Emi” Mahmoud, the reigning 2015 Individual World Poetry Slam Champion and 2016 Woman of the World Co-champion. Emi spoke on the TEDMED stage in 2016, and you can watch her talk here.


My grandmother, Nammah, never learned to read or write—where we came from, girls were forbidden from doing so. In May of 2016 I, her granddaughter, surrounded by friends and family, graduated from Yale University and closed the ceremony with something I, a woman, had written. But a number of factors had to fall in place before my family was able to reach that point.

Nearly 19 years before then, my mother, father, younger sister, and I had boarded a plane in Yemen, green cards in hand, after having left Sudan for safety well before. At the time, my father, a surgeon, and my mother, a medical lab technician, were exactly the kind of people history likes to laud as proof that immigrants are capable of incredible things—testaments to the triumph of humanity in the face of adversity. However, this valuing inherently comes at a cost, as if achievements represent human worth.

2 IDP women

Photo credit: Afaq Mahmoud, 2017
Two internationally displaced people speaking on women’s rights and how the war affects women, specifically focusing on the importance of education. Many women in the camps understand the necessity of their role in finding a way forward. Their names have been excluded for protection.

Today especially, with more than 65 million people displaced worldwide, 21 million of whom have become refugees, we often point to the attractive accomplishments of a select few as proof that refugees are worth saving and reduce the rest to a series of numbers.

What this focus on value or inherent worth suggests: in today’s world, if I and my grandmother were both contemporaries seeking refuge, I would be deemed worth the humanity, and she, a woman ultimately responsible for my entire existence, would not. What’s more, with recent policies, my family and I—even with the credentials that once could save us—would have been turned away once for Sudan, the country we were born in, and again for Yemen, the country in which we initially sought refuge. Together, our entire family would be seen as another component of the 21 million.

Loss is deeply personal, and yet we see it on a global scale almost every day. When this happens we become desensitized. Reversing that process and putting people back in front of the numbers is incredibly difficult, but incredibly necessary. This is precisely why I and we must speak of the individuals entrenched in the conflicts front and center in our world and not of their future success or earning potential. The most valuable thing we will miss is human life. There’s still so much to be done for all my sisters who will not have the same opportunity to prosper, or on even the most basic level, to survive.

Young student at Zamzam refugee camp school

Photo credit: Afaq Mahmoud, 2017
A young student at Zamzam refugee camp school in Northern Darfur. The photo was taken two weeks after an attack on Zamzam camp in 2015. In the absence of resources, the school depends solely on the work of volunteers, and its students and teachers live in constant fear of impending attacks.

I am often asked how it is that I stand by my identity and why I write and speak with conviction, despite the ramifications that may come with being a young, black, American, Afro-Arab, Muslim, woman. I often answer that it is because of my grandmother and the sacrifices that she and people like her have made and continue to make. I speak because my grandmother did not get the chance to and I am not alone. Earlier this year I joined the How to Do Good speaking tour with a series of incredible philanthropists and activists (including Fredi Kanouté, former West Ham United, Tottenham Hotspur and Sevilla striker and founder of Sakina Children’s Village, and Dr. Rouba Mhaissen, an economist and activist featured in Forbes 2017 30 Under 30, and the founder of SAWA) and we’ve made it our mission to inspire positive action. This initiative, and so many like it, is exactly what we need to reignite empathy in a world that seems to have lost it.

Infant receiving medical treatment

Photo credit: Afaq Mahmoud, 2017
An infant receiving treatment at Zamzam refugee camp in Northern Darfur. The medicine she requires isn’t readily available in the remote region.

I believe that when we are spoken to politically, we are compelled to respond politically, when we are spoken to academically, we are compelled to respond academically, when we are spoken to with hate, we are compelled to respond with hate; but when we are spoken to as human beings, we are compelled to respond with our humanity. In this global moment with endless pressing questions and not many daring to answer them, my challenge to you is to respond with your own humanity.

Visit Emi on Facebook to learn more about her latest work.

Announcing the TEDMED 2017 Research Scholars

Over the years, we’ve found that the curation of a powerful and compelling Stage Program relies on one secret ingredient: the TEDMED community. From our Editorial Advisory Board and Research Scholars to our Partners and volunteers, the TEDMED community is composed of all of the individuals and organizations that provide us with the insight and expertise to help identify the topics, themes and Speakers that appear at the annual TEDMED event.

After completing the first half of our Editorial Advisory Board meetings on both the East and West Coasts, we are now bursting with captivating Speaker nominations for the TEDMED 2017 Stage Program. To ensure that each Speaker on the TEDMED stage represents high-quality and scientifically credible ideas in health and medicine, we rely on a group of carefully selected Research Scholars to help us vet each nomination.

TEDMED’s Research Scholars are a diverse group of experts from across the globe who specialize in a wide range of subjects, such as biophysics, health policy, neuroscience, immunology, bioinformatics, nutritional and metabolic biology, public health and epidemiology. Regardless of their field, each Research Scholar is passionate about the future of health and medicine and has graciously invested their time and expertise to help shape the TEDMED 2017 Stage Program.

As we welcome the TEDMED 2017 Research Scholar class, we’d like to thank the TEDMED 2016 Frontline Scholars and volunteers for their hard work and support last year.

TEDMED’s 2017 Research Scholars represent organizations including the National Cancer Institute, The University of Chicago Medicine, the YMCA of the USA, The Gladstone Institute of Neurological Disease, the Centers for Disease Control and Prevention, Stanford University School of Medicine, The World Health Organization, the Dell Medical School and many more.

We are proud to announce the 2017 class of TEDMED Research Scholars, and we are deeply grateful for their contributions. Learn more about each of them below:

Ajay Khilanani, MD – Critical Care, Global Health, Telemedicine

Alex Cressman, MD, MSc – Disease, Healthcare Delivery

Amy Faith Ho, MD – Health Policy, Medical Humanities, Medicine

Ann M. Geiger, PhD – Cancer, Disparities, Epidemiology, Healthcare

Ata Kiapour, PhD, MMSc – Medical Devices and Wearables, Sports Injuries

Beth Taylor Mack, PhD – Health and Wellness Innovation

Bridget N. Queenan, PhD – Neuroengineering, Neuroscience

Bryon Petersen, PhD – Bioengineering, Stem Cell Biology

Christina Allison Gulotta, MPH – Global Health

Cindy Greatrex – Ologies in Telehealth, Radiological Intervention

Dezmond Taylor-Douglas, PhD – Immunology, Life Sciences, Obesity

Diana Lutfi – Medical Ethics, Social Systems, Worldviews

Diego Wyszynski, MD, MHS, PhD – Drug Safety, Pharmacoepidemiology, Pregnancy Registry

Emilie Grasset, PhD – Immunology

Geetha Rao, PhD – Medical Technology Innovation

Halima Moncrieffe, PhD – Autoimmunity, Knowledge Sharing, Pharmacogenomics

Happy D. Thakkar, MD – Cardiology, Care Coordination, Health IT

Jasmin Saric, PhD – Digital Strategy and Transformation

Jeffrey L. Blackman, MBA – Corporate Innovation, Entrepreneurship

Jill J. Williams, PhD – Bioengineering, Nutrition Science, Nutritional and Metabolic Biology

Joshua Brown, PharmD, PhD – Health Economics and Outcomes Research

Kaitlin E. Sundling, MD, PhD – Pathology, Quantitative Biology

Karen Palmer, MS, MPH – Healthcare Delivery and Funding, Health Policy

Kim Kristiansen, MD – Entrepreneurship, Research

Lisa Sundahl Platt, MS – Health Systems Science and Engineering

Nicole Stone, PhD Candidate – Cardiac Reprogramming, Epigenomics

Paul Lindberg, JD – Healthy Communities

Pooja Prabhakar – Global Health

Qiming Duan, MD, PhD – Epigenetics, Medicine

Ramsey Najm, PhD Candidate – Neurodegenerative Disease, Regenerative Medicine

Ritesh Bhattacharjee, MPH – Dentistry, Oral Oncology, Public Health

Rukmani Sridharan, MSc – Immune Response, Regenerative Medicine, Stem Cells

Sandor Bekasi, MD, MSc – Mobile Health, Primary Care

Shirley Yan – Public Health

Sneha R. Aidasani, MS – Global and Public Health, Maternal and Child Nutrition, Reproductive Health

Srdjan Saso, PhD – Fertility Preservation and Restoration, Oncofertility, Ultrasounds

Sudah Yehuda Shaheb, MD – Endocrinology, Medical Anthropology

Sumudu Perera, MD candidate – Global and Public Health, Health Innovation and Technology

Tabitha Moses, MS – Bioethics, Medicine, Neuroscience, Public Health

Tej Azad, BA – Bioinformatics, Digital Health

Teresa Wilson – Alternative Medicine, Biotechnology, Healthcare, Marketing

Tony Manuel, MD, MMM – Frontline Healthcare Delivery

We’ll soon be sharing the event theme for TEDMED 2017 and the various topics that will make up the Stage Programso stay tuned! And, if you’ve been thinking about joining us in Palm Springs this November 1-3, there is no better time to register. Click here to join us.

Announcing the TEDMED 2017 Editorial Advisory Board

Blockchain in healthcare; Synthetic genomics; Healthcare reform; The opioid epidemic; Drones for good; The effect of social determinants on health; Cost of drug innovation; Impact of climate change on health. These are just a few of the topics that we explored in our first Editorial Advisory board meeting last week in New York City. We’re looking forward to our second meeting in San Francisco this week, as we begin to design the stage program for TEDMED 2017. We work hard to ensure that the most important and timely topics in health and medicine are covered every year, and in order to curate a truly multidisciplinary program, we rely on the guidance and participation of the TEDMED Community – more specifically, TEDMED’s Editorial Advisory Board (EAB).

The EAB members contribute their time, expertise and insights to help design TEDMED’s annual program. This year’s passionate EAB represents organizations that intersect all areas of health and medicine, including technology, academia, philanthropy, journalism, foundations, and much more. Their diversity ensures that TEDMED’s stage program represents a broad range of cutting-edge ideas in health and medicine.

The 21 thought-leaders that make up this year’s EAB represent influential leaders across the landscape of health and medicine. Some share their expertise from serving on the board in previous years, while others bring the fresh perspective of new members.

We’re delighted and honored to announce the members of the TEDMED 2017 Editorial Advisory Board and we thank them for their collaboration:

Atul Butte, MD, PhD, Director of the Institute of Computational Health Sciences at the University of California, San Francisco

Bijan Salehizadeh, MBA, MD, Managing Director, NaviMed Capital

Celine Gounder, MD, ScM, Internist, Epidemiologist, Journalist, and Filmmaker

Daria Mochly-Rosen, PhD, Professor of Chemical and Systems Biology at Stanford University and Founder and Director of Stanford University’s SPARK program

Giles Newton, PhD, Head of Editorial at Wellcome Trust; Editor-in-Chief of Mosaic

Hemai Parthasarathy, PhD, Scientific Director, Breakout Labs and Founding Partner, Breakout Ventures

Jeff Karp, Associate Professor, Brigham and Women’s Hospital and Harvard Medical School

Kafui Dzirasa, MD, PhD, Assistant Professor of Psychiatry and Behavioral Sciences at Duke University

Leonard Sender, MD, Director of Cancer Services at University of California

Lucy Kalanithi, MD, FACP, Clinical Assistant Professor of Medicine at Stanford School of
Medicine

Michael Painter, MD, JD, Senior Program Officer at the Robert Wood Johnson Foundation

Michael Penn, MD, PhD, Vice President of Diversity, Outreach, and Mentoring at the
Gladstone Institutes

Orin Levine, PhD, Director of Vaccine Delivery at the Bill & Melinda Gates
Foundation

Pam Belluck, Health and Science Writer, New York Times

Roxanne Khamsi, Chief News Editor at Nature Medicine

Sandeep “Sunny” Kishore, MD, PhD, Associate Director of the Arnhold Institute for Global Health

Stacey Chang, Executive Director of the Design Institute for Health, University of Texas at Austin

Susan Skochelak, MD, MPH, Group vice president, Medical Education American Medical Association

Udaya Patnaik, Founder and Principal, Jump Associates

Ursheet Parikh, Partner, Mayfield Fund

Vanessa Ruiz, Founder of Street Anatomy

A Global Mindset for Local Innovations

This guest blog post is by Partho Sengupta, the incoming Director of Cardiovascular Imaging and Chair of Cardiovascular Innovation at the Heart and Vascular Institute at West Virginia University, Morgantown. He spoke on the TEDMED stage in 2016 and you can watch his talk here.


Dr. Sengupta scanning and educating volunteers in American Society of Echocardiography Humanitarian Events in Sirsa and Delhi, India in 2011. Image courtesy of the American Society of Echocardiography (ASE) foundation for cardiovascular ultrasound (www.asefoundation.org).

By 2030 cardiovascular disease is projected to account for 25 million deaths worldwide. Over the last few decades, the cardiovascular community globally has continued to respond to this pandemic with groundbreaking innovations. However, the diffusion of innovation remains unequal since healthcare sectors around the world are characterized by social inequality, depending on where the patient lives and the system in which care is received. When I came to the US in 2004, I wondered if my research or any of my breakthroughs would ever impact the lives of patients in India or other countries.

In 2011, I was tasked by the American Society of Echocardiography (ASE) to develop international programs that address educational needs of the international membership. And here was an opportunity to engage people from both US and abroad in a meaningful way. Inspired by the work of Saint Gurmeet Ram Rahim Singh Ji Insaan and the help of my colleagues who perform humanitarian work in Sirsa, a rural village town in North India, I decided to combine humanitarianism with new technology as a model of innovation. One of my first projects in India brought together industry support, membership engagement, education and research simultaneously over 2 days. We performed focused echocardiographic studies with Web-based assessments in which over 1000 examinations were performed in remote India over two days, which were uploaded to the cloud and read by over 75 institutions worldwide. After the success of the first event, we performed several such cardiovascular camps and simultaneously educated local health personnel – a practice that now forms the heart of the ASE Foundation Programs. It has been fulfilling to see the enthusiastic adaption of such humanitarian program by societies across UK, Europe, Asia and South America.

ASE volunteers who participated in the humanitarian-innovation event in Delhi, India. Image courtesy of the ASE Foundation for Cardiovascular Ultrasound (www.asefoundation.org).

We in the United States are diverse and form a microcosm of different societies and communities, each with their own specific needs in this large health care system. I have often pondered if the real value of addressing the technological and educational needs of the global healthcare community could be in finding solutions to some of our own needs within the US- an investment with dual purpose! There are regional pockets in the US with extremely high rates of death and morbidities related to income, education level, sex, race, and ethnicity and employment status. One of the states with the highest prevalence of cardiovascular disease (13.7%) is West Virginia. The rate of heart attacks is the highest in the nation (7.8%). The prevalence of obesity in adults is 35.1%, with over 40% having hypertension and only two out of 10 adults ever screened for cardiovascular risks. The expansion of Medicaid under the Affordable Care Act resulted in nearly half a million new enrollees in Medicaid by 2015. However, the state continues to grapple with efforts to reduce shortage of healthcare professionals.

The success of the humanitarian innovation program carried out in India by Dr. Sengupta also kindled interest in other world societies. Seen in the picture are volunteers of a similar project that was carried out by British Heart Foundation in Africa. Image courtesy of the Mark Monaghan, British Society of Echocardiography (www.echoinafrica.org).

In mid 2016, at the same time I was asked to participate in TEDMED, I received an invitation from a newly formed Heart and Vascular Institute at the West Virginia University, Morgantown to steer the vision for a statewide Noninvasive Cardiovascular Imaging program with creation of a Cardiovascular Innovation Center that would focus on developing new strategies. Some might question why I would ever leave my position in New York City and move to West Virginia. But as I put my TEDMED talk together, I realized perhaps West Virginia offered a fertile ground for innovation to implement the vision of automated technologies, robotics and implement novel processes to screen latent cardiovascular disease that I was talking about.

The successful humanitarian-innovation projects in India spurred interests widely. Here is seen a similar project organized along with Care Harbor healthcare clinic for the uninsured, underinsured and underserved in LA County in 2014 at the Los Angeles Sports Arena. This was the ASE Foundation’s first U.S.-based humanitarian mission besides the other programs carried out in Vietnam, Argentina, Philippines, Kenya, central China, and Cuba. Image courtesy of the ASE Foundation for Cardiovascular Ultrasound (www.asefoundation.org).

When I think about the opportunities over the years that have come my way, I feel fortunate and it becomes even more relevant that I find ways not just to practice medicine but push the field forward meaningfully. What if high resource urban health care center in the US may have locked up the funding and physicians, creating even greater disparities in the US? Perhaps I feel that there is opportunity to disrupt this meaningfully.

I believe that organizations like TEDMED can encourage free minds to make a real change, and I certainly believe, as my talk travels far and wide, it could serve as a vehicle for engaging collaborations with industry partners, non-profit organizations, national societies, local state bodies and university professionals to bring this vision to fruition in West Virginia and the world.

Finding common ground through music

This guest blog post is by Sam Maher, a West Australian instrumentalist and drummer who is best known for his unique playing style on the handpan. He spoke and performed on the TEDMED stage in 2016 and you can watch his talk here.


In 2013 I found myself caught in the midst of a torrential downpour in the city centre of Perth, Western Australia – stunned, I decided to run for it. As I bolted for shelter within the central train station I was completely unaware of the pivotal encounter that would soon take place and change the direction of my life forever. Catching my breath and wiping the rain from my brow I accepted the fact that I wouldn’t be leaving the station anytime soon and took a seat against the wall of a deli that had its roller shutters pulled down – Sunday trading was still a relatively new concept in Perth back then and the station was completely abandoned.

A couple of weeks before this I received an instrument in the mail direct from Germany which I spent close to a year obsessively searching for. It wasn’t easy to find – the instrument, still in its infancy, had only been successfully crafted by a handful of committed artists across the globe, and the hypnotic tones that it created when struck caused a ripple effect around the world, establishing hoards of dedicated admirers, all desperate to get their hands on one – myself included.

The original name of this instrument is the “hang” – created by Felix Rohner and Sabina Schemer in Switzerland in 1999 after many years of researching the construction of the traditional steel pans of Trinidad and Tobago. By combining these techniques to the ideas of other ethnic percussion instruments such as the Udu of Africa and the gamelan instruments of Indonesia the Hang was born. The idea of the instrument laid dormant for several years, confined to its birthplace in the Swiss mountains and inside the hearts of the very select few that were lucky enough to be accepted to own one. The instrument’s appeal grew when the internet began finding its way into households worldwide, and before too long the hang was a viral phenomenon. With the demand far outweighing the supply, independent innovators attempted to fill the gap by recreating their own versions of the hang, each giving it their own title. The controversy that followed is still in full force today and somewhere along the way in an attempt to void the feud it was decided that the generic term for the instrument would be the “handpan” unless the instrument was in fact an original hang made by Felix or Sabina.

Now – back to the train station.

I had my handpan with me that stormy afternoon, and the situation presented a perfect opportunity for me to experiment with it. So experiment I did. For close to an hour I sat with my eyes closed as I navigated my hands around the instrument’s cylindrical surface, striking each hammered circle with my finger tips and the bulging knuckles of my thumbs, hearing the smooth frequency that arose and observing how each carefully placed note related to one another as the metal vibrated in perfect harmony. When I opened my eyes I found myself seated next to an elderly aboriginal woman who appeared to be homeless. She looked at me with a tear in her eye as she asked if I could continue playing. Over the next half hour we were both swept up in a wave of emotion as I bore witness to the downpour of her life’s trials and tribulations; living as an Aboriginal woman inside a country that has chosen to strip her of rights, and rape and ignore her. The misery and power of that moment changed my life forever.

 

Music is unique in its ability in allowing us to experience the same emotions regardless of political views, race, sexuality, faith – it proves that we are the same, and brings us together. It allows us to express and understand our feelings freely, to come to terms with the difficulties, the triumphs and the collective challenges we face in our lives.

 

The handpan has proved itself as a powerful communication tool capable of transcending language, cutting straight to the emotional core of anyone who chooses to listen to it. In the the time that followed that chance encounter 4 years ago I have spent 14 months traversing the Americas, from Mexico City down to the Patagonian region of Argentina, learning the instrument on the go, surviving mostly from the money and acts of human kindness I earned from the streets. At the end of that trip a video surfaced of me improvising with the instrument in the subways of New York City which subsequently reached over 20 million people. I have now performed in over 22 countries around the world, and have come into contact with hundred of thousands of people completely different than myself, yet for a brief moment of time we were all the same. To be accepted and accept these otherworldly places, people and ideologies, so different to my own, through the language of music and the artistry of the handpan is something that will never fail to astound me.

Dispatches of solace and hope: Q&A with Sarah Gray

On Hope and Solace: Sarah Gray

Sarah Gray

In her TEDMED talk, Sarah Gray, director of communications for the American Association of Tissue Banks (AATB), shared her journey to find meaning in her most tragic loss by learning how to donate the organs of her newborn son to advance scientific research. We asked Sarah to tell us more about her outreach work.

TEDMED: Could you share any exciting stories you’ve encountered in your work?

SARAH: On the research front, I’m pleased to share that Eversight, one of the largest consortiums of eye banks in the USA, recently launched a new program called Hope and Healing that is designed to help eye donor families meet the researchers who received their loved one’s tissue.

In a story similar to my own, an especially touching family tale is about Amalya, a baby who died of anencephaly who donated to a variety of studies around the USA. His parents were able to meet some of the researchers who received his donations and learn about the impact of his donation.

TEDMED: In your TEDMED talk, you encouraged the audience to contact you with any stories of their own about tissue donation. With over a million views of your talk, have you connected with any viewers with powerful stories of tissue, organ or marrow donation?

SARAH: Absolutely! I have received emails from amazing people from all over the world, from New Zealand and South Africa to Scotland, Spain and France. Some just wanted to say that they liked the talk, some shared stories of loss, some told me that I helped them see a new perspective, and some asked for practical advice about donation and obtaining research samples. One researcher contacted me to find out where he might be able to access different types of tissue for a study on the genetic causes of certain diseases and I am glad I was able to help him.

I was really touched by every person who reached out, and a few of the emails in particular. Two different people from two different countries told me they had terminal cancer and wanted to know where they might be able to donate their tissue when they pass away so that the study of their tissue might help others. Reading these emails was so moving and I am honored I was able to help them.


Learn more about Sarah’s journey in her powerful memoir, A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science. 

Balancing Medical & Musical Worlds: Q&A with Suzie Brown

In her TEDMED 2015 performance, cardiologist and singer-songwriter Suzie Brown and her husband, Scot Sax, give a vulnerable, evocative performance that tugs at our heartstrings. We caught up with Suzie to learn more about the delicate balance between pursuing her musical passions and practicing cardiology.

Credit: Zoey Sless Kitain

Credit: Zoey Sless Kitain

TEDMED: Can you tell us more about the fine line between exposing your outside life to your patients, being vulnerable with them, and maintaining the level of expertise, stoicism, competence, and objectivity that is expected when playing the role of a doctor?

SUZIE: It IS a fine line. When I am at the hospital, I am 100% dedicated to my patients and I would never want there to be any question about that. For that reason, I generally do not volunteer that I’m a musician, or even that I work part time. Once I have established a more long term relationship, and my commitment to them and competence as their physician has come across, I find it easier to talk about (but I still don’t bring it up). I hope that they feel it on some level though, in that I am more vulnerable and empathetic than I would be otherwise.

TEDMED: How do you balance the medical professional side and musical sides of your life?

SUZIE: It’s not easy. And it’s become even more complicated now that I have kids. My schedule currently alternates between 2 weeks working as a doctor and two weeks “off” from medicine, which is my time for music. After my two doctor weeks, I’m usually exhausted, and I’m always missing my family like crazy. I need to physically and mentally recharge before I’m able to be creative, which takes time. I can’t wait to spend time with my husband and daughters after being away so much at work. In between family and recharging time, I squeeze in my creative time. These days that mostly consists of songwriting with other artists in Nashville, though I still play shows and make albums. Inevitably, the two weeks “off” goes by in a flash. I often wish I had more music time, though I’m SO grateful for the time that I do have.

TEDMED: Do you think the fact that you’re a musician makes you a better doctor?

SUZIE: Definitely. Having time for music allows me to recharge, to replete my emotional reserve, so I have more to give to my patients. It also allows me to access my feelings and maintain a healthy amount of vulnerability – without time away, it’s easy to shut down emotionally, just to get by.


Download the song from Suzie’s TEDMED 2015 performance, “Sometimes Your Dreams Find You,” for free here!

Making Connections Through Data

Lori Melichar photoLori Melichar is a director at the Robert Wood Johnson Foundation—the largest philanthropy in the United States dedicated solely to health and health carewhere she focuses on discovering, exploring and learning from cutting edge ideas with the potential to help create a Culture of Health. She can be found on Twitter @lorimelichar.

Data about us—where we are, what we’re buying, what we’re reading—is being collected everyday, everywhere. Our cell phones, TVs, wearables, watches and even our Facebook feeds collect data about our daily lives. The Robert Wood Johnson Foundation (RWJF) is convinced this data also contains important insights into how we live, learn, work and play—and we think harnessing these insights could lead to major improvements in the health of all Americans.

Efforts to make sense of all this personal data and unlock the knowledge within are underway.

RWJF grantee Health Data Exploration Network has been bringing researchers and makers of health apps and devices together to explore the connections between community environments, individual behaviors and health. One such study enables RunKeeper participants to share their data with researchers who want to understand how the built environment relates to types and amounts of exercise over time.

Researchers at the University of Pennsylvania—another RWJF grantee—are exploring whether what people post online could give health care providers clues about their patient’s health. 3,000 people have agreed to give these researchers access to their electronic health records along with their Facebook, Instagram and Twitter data.

Using Apple’s ResearchKit platform, grantee Sage Bionetworks has been able to capture data on abilities affected by Parkinson’s Disease. Thousands of people completed tasks using their iPhones—from completing a speed tapping exercise on their phone’s touchscreen to measure dexterity, to using their phone’s microphone to record themselves saying “Aaaaah” to measure vocal characteristics—to generate that data. What’s more, over 10,000 of these individuals have agreed to share their data with researchers worldwide to help accelerate our understanding of Parkinson’s. Encouraged by this incredible response, we recently launched the Mood Challenge, seeking proposals from researchers who want to use ResearchKit to further the understanding of mood and how it relates to daily life. And soon, Android users will also be able to participate in mobile health studies thanks to ResearchStack.

The question of privacy has been central to all of these data sharing efforts—and it’s a big one. To get people to share their data, they need to feel comfortable doing so. What we’ve learned is that we can gain that comfort and trust by designing studies in ways that allow people to choose how to share their data and with whom. We have been excited to see that so many people are willing to donate their data for the public good. And we are hopeful that this number will grow. To us, that demonstrates a real shared value around health.   

Now, with all this personal health data at our fingertips, we have a responsibility to make that data actionable—to share back meaningful information with citizens, providers, and policy makers so they can make choices that support the health of their families, their communities, and themselves. While progress has been made, there are still hurdles to overcome and still so much work to do to maximize the impact of this shared data.

For data to be actionable, it needs to be relevant and representative of healthy people and those who are ill, and needs to represent all facets of the American population, not just those who regularly visit their provider or purchased a smart watch. It also needs to be inclusive of data about the social determinants of health. We are concerned that research and applications built using data that is only representative of a certain subset of the population will produce solutions that only help those communities.

Actionable data doesn’t always need to be quantitative. We also need to understand how emotions and qualitative information can be incorporated into data-driven efforts to improve health and well-being. We note with interest the work of MyCounterpane, who is working with individuals and caregivers living with Multiple Sclerosis to collect emotions as a way to understand the impact of the disease beyond the physical effects. Grantee Atlas of Caregiving is using wearable cameras and sensors to understand how caregivers spend their time, how stress plays into caregiving, and which activities are most stressful. Importantly, they also measure moments of joy and happiness.

How can you help? If you have a cutting-edge idea for how to improve learning from health data, consider joining the Health Data Exploration network or submitting a proposal to the Foundation. Finally, find me on Twitter and keep the conversation going. I’d love to hear from you.

Bridging the Gap: Neighbors Supporting Neighbors in Harlem

This guest post is by Manmeet Kaur, Founder and Executive Director of City Health Works — a nonprofit, social enterprise that aims to close the gap between hospitals and communities in Harlem.

Manmeet KaurIn order for health to flourish, we need people in our lives that make us feel supported and accepted. Social support is essential to well-being and plays a fundamental role in one’s ability to make healthier choices—it is a critical aspect of making health a shared value. Unfortunately, only half of adults in the U.S. report getting the social support they need. Those numbers are even lower among minority groups and those with lower levels of education and income.

In many countries around the world, however, communities already employ effective approaches that have demonstrated impact. In Cape Town, South Africa, for example, I worked with a nonprofit that hired people from the community and trained them as peer health educators to tackle chronic health issues. This is where I first witnessed the power of peer education and the ripple effect such educators have not only on an individual’s health, but also on other aspects of their lives.

When I returned to my hometown of New York City, I immediately saw the potential to adapt this model of health care delivery from abroad and apply it to my neighborhood here in East Harlem. This is a neighborhood in which life expectancy is 9 years lower than the life expectancy of residents of midtown Manhattan. 50% of healthcare spending in this community is on only 5% of the population. The level of chronic illness in this community is so great that clinicians struggle to deliver the high-quality care patients need. They often aren’t able to support patients through the necessary long-term nutritional and behavioral changes to keep chronic illness under check. They are completely overburdened.

That’s where City Health Works comes in.

Inspired by community health worker innovations from South Africa, City Health Works engages community members to serve as the bridge between the doctor’s office and the real challenges people with chronic illnesses face on an ongoing basis. We don’t replace traditional medical care. We simply fill a gap between the health care system and the everyday lives of the people that system is meant to serve.

We start by finding and employing individuals living within the neighborhood who have a strong sense of empathy and good listening skills, are non-judgmental in nature, and can speak to shared life experiences. We train them to become health coaches: we teach them how to build relationships with their patients and truly get to know their needs, which often go beyond health and health care. In addition to receiving training on basic health care in a clinical environment, health coaches learn how to make referrals to services like banking and housing, and recommendations for recreational activities, such as local walking groups, knitting clubs, and bingo nights.

Hospitals and clinics can refer patients directly to us. They refer individuals who struggle with multiple chronic diseases and the stressors of poverty, old age, physical and mental limitations, and language or literacy barriers. Most of them experience depression and struggle with social isolation.

We pair each patient with one of our health coaches so they can receive personalized support and the resources they need to make healthy choices. Initially, there is some hesitation on the part of patients. Health choices are, after all, deeply personal. But once they learn that their coach is from the same neighborhood, they grew up down the street from them, or they even live in their same housing complex, they become more comfortable. Trust is assumed and they open up.

Today, our health coaches meet one-on-one with more than 300 patients in East Harlem on a regular basis. Over the first two years of the program, we measured depression levels amongst our patients and found that simply having a health coach who visits them regularly had a huge effect on their social and emotional well-being. Coaches have a powerful ability to motivate their patients, help them build self-confidence, and strengthen their ability to manage their lifestyle and medical care. We are proving that adding extra support for those who need it most not only saves money, but saves lives.

By adopting practices from outside of the U.S.––an approach for which the Robert Wood Johnson Foundation is now actively seeking proposals––City Health Works has been able to provide critical social support for the people in New York City who need it most. We are changing attitudes about the role of community, fostering health as a shared value, and changing our patient’s expectations about the level of care they should be getting. By fostering an engaged community, we are breaking through the walls of isolation and building a Culture of Health.