The future of infusing art into anatomy

Achilles_anatomy

Greek street artist, Achilles, used the rooms of an abandoned building to create a spatial journey through layers of a human head, from the skull to the face.

By guest contributor and TEDMED speaker Vanessa Ruiz

Eaton-Houdon Écorché by Scott Eaton

Eaton-Houdon Écorché by Scott Eaton

When we talk about the future of medical illustration and learning anatomy, it’s often tied to advances in technology. What advances in technology will allow students to learn anatomy faster, allow them to memorize terms more efficiently, or provide better methods for them to interact with anatomy without actually touching a cadaver? But if you look at all of the resulting technologies, such as 3D anatomy apps, augmented reality organs, or virtual reality cadavers, the foundation still lies within an established ideal of anatomical representation. We’ve simply moved the same anatomical imagery from a textbook page to a screen. But instead of trying to change the medium by which we learn to technology, why not change the mindset of the approach to an artistic one, to engage a broader audience? Why shouldn’t the public, rather than just medical professionals, have access to learning anatomy?

Nearly 10 years ago it was difficult to find many artists featuring anatomy as a subject in their artwork. And I’m not referring to “the figure” as it is studied in art. I’m talking about the muscles, skeleton and viscera— what lies beneath the skin. Today the acceptance of anatomical art in pop culture is palpable. It’s pulsing in the trends of film, street art, advertising, interior design, and even fashion. A quick web search for “anatomical heart necklace” yields an overwhelming amount of resulting iterations. What is fascinating is that this anatomical art movement has risen exponentially alongside the rather stagnant practice of anatomy education. With all of the advances in medicine, the time and resources allocated to teach anatomy to medical students is diminishing. This is why students often turn to technology such as anatomy apps to supplement their learning.

Danny Quirk paints the musculature of the forearm on Anna Folckomer of Immaculate Dissection

Danny Quirk paints the musculature of the forearm on Anna Folckomer of Immaculate Dissection

But, as the boundary between science and art blurs, it is no longer sufficient to talk about either on their own. We need to see how each informs the other. This crossover between medical illustration, art, and anatomy learning is beginning to take place. We’ve gone beyond the “Anatomy Coloring Book.”

The dramatic anatomical body paintings by medical artist Danny Quirk, of Immaculate Dissection, are now used to teach anatomy to anyone from physical therapists to athletic trainers to bodywork practitioners; the technique has been so popular that it’s been replicated in anatomy classes around the world.

Sculpting anatomy by hand from the skeleton outward has become a means for not only artists to learn anatomy, but for medical students as well. This is where the distinction between viewing a body in 3D versus tangibly building a body becomes clear; building by hand requires spatial knowledge and memory– tying doing with learning instead of looking and memorizing.

The truest delivery of anatomy to the public takes the form of street art. A growing number of artists are vibrantly broadcasting anatomy on the streets in a vast array of styles. Street artists are pushing their work to be site specific and interactive.

heArtbeats by Lanoc

heArtbeats by Lanoc

Imagine the immersive experience of learning anatomy by walking through rooms of an abandoned building. As dynamic as Achilles‘ warehouse anatomy above, this piece by Croatian street artist Lanoc shows an anatomical heart pumping blood through industrial air ducts. It is site-specific street art, pulsing with life.

Austrian street artist, Nychos, is famous for his explosive views of anatomy. He recently started a series of anatomical charts using his edgy, hard metal style.

The Human Skeleton Anatomy Sheet by Nychos

Imagine seeing this in a doctor’s office: The Human Skeleton Anatomy Sheet by Nychos

While the public is embracing anatomical art, there are many medical professionals that still see medicine and art as two separate subjects. A radiologist approached me after my TEDMED talk and excitedly told me that she creates art from X-rays. When I asked her to see it she said that she never shares it because she doesn’t think it is special or it might be looked down upon by her peers. I encourage artistic expression in medical professionals because it is natural and deeply tied to medicine.

It can be argued that there are only so many ways to represent anatomy, but I counter that by all the astounding ways that artists are able to portray anatomy in their work. Artists have broken anatomy out of the confines of the medical world and are now beginning to reintroduce it back in with a whole new approach and style. The future of medical illustration doesn’t depend solely on advances in technology; it begs to be pushed further by artists. I feel compelled to showcase and catalog contemporary anatomical art, as well as promote the artists and medical illustrators that are pushing the boundaries of anatomical visualization. Because one day, they will be part of the history that leads to something greater– when the public will fully appreciate and understand its own anatomy.


Watch anatomical artist and curator Vanessa Ruiz’s TEDMED talk, in which she shares how she fulfilled her dream to take anatomy to the streets, and make medical illustration– and the resulting public knowledge of the human body– intersect with contemporary art. Check out her website, streetanatomy.com, which showcases human anatomy in art, design and pop culture.

What’s Missing From Engineering and How to Solve It

Sangeeta Bhatia

Sangeeta Bhatia

In her TEDMED talk, Harvard-MIT physician, bioengineer and entrepreneur Sangeeta Bhatia showed how miniaturization, through the convergence of engineering and medicine, is transforming health– specifically, through the promise of nanotechnology for early detection of cancer. She’s also been a huge advocate for the participation of women and girls in the Science, Technology, Engineering and Mathematics (STEM) fields. We asked her to share more about her dedication to empowering girls to develop their skills in the STEM fields.

engineering

What we desperately need: the best minds, and their talent.

 

TEDMED:

In addition to your work in bioengineering, medical research and being a professor, you’ve been a huge advocate for the participation of women and girls in STEM-related fields. How are these two strands of your work related?

SANGEETA:

They are absolutely related! We need the best and brightest minds to realize these kinds of technological visions. The engineering pipeline is only 20-25% female; only 3% of tech startups are led by women. If I look around at the workforce in engineering at the moment in our country, it’s only 11 to 12 percent women. And the data shows that we lose women from this discipline all the way along what we call the ‘leaky pipeline’ that starts at age 11 and progresses all the way through to the workforce and to the board room– presently 40 percent of women who earn engineering degrees quit the profession or never enter the field at all.

Some years ago, some colleagues and I at MIT started this organization, Keys to Empowering Youth, to target girls between 11 and 13 years old, the critical earliest age range at which girls drop out of engineering. We bring them into labs at MIT and other universities where they have hands-on experiences with experiments. Over the course of the day, these girls see how fun, exciting and accessible it can be. They meet women who are college students in the Society of Women Engineers and are a little further up the pipeline than them as mentors. And the girls ask their mentors questions like, What is mechanical engineering? Electrical Engineering? Computer Engineering? What is the job that you hope to do? Is it fun? And we have seen that they can definitely be inspired.

Here are my two daughters, wdaughter 1ho turned 9 and 12 this year, having fun in my lab! We need girls to be inspired, we need them to have mentors, and we need them to have role models. I hope that my talk on the TEDMED stage can inspire more girls all over the world to choose to develop their skills in engineering and deploy them to revolutionize human health. We would all benefit.

TEDMED:

Your lab is known for choosing and training people to work in an interdisciplinary way. How do you go about accomplishing this?

SANGEETA:

We consider ourselves a bioengineering lab focused on impacting human health so we tend to attract people across a spectrum of science, technology and medical expertise. We select people that are ‘best athletes’ in the sense that they’ve excelled in whatever they were doing, they complement our mission, are invested in our approach and play well with others. Once they arrive we tell everyone that they can spend 20% of their time ‘tinkering.’ Over the years, the students have started calling these ‘submarine’ projects. They surface them to me if and when they turn into something exciting. And if they never do, that’s okay too. The point is that science can be full of failure and we need ways to play and stay creative, motivated and engaged. It just so happens that some of our most exciting advances have come out of such submarine projects.

TEDMED:

You’ve spoken about the power of mentors in your own training. Can you talk about a mentor who has had outsize influence on your work and life and how they became such an effective mentor for you?

SANGEETA:

I’ve been fortunate to have a series of very powerful mentors in my training, all of whom saw more for me, at critical moments, than I saw for myself. The most influential mentor is my father who first encouraged me to become an engineer by bringing me to a friend’s lab at MIT to learn about the intersection of engineering and medicine. Later, he would also encourage me to become an entrepreneur. Last year, he was my guest of honor when I was inducted to the National Academy of Engineering and we got to celebrate the journey together. I believe that family aspirations for their children, and especially for young girls, are critically important to keeping the technology pipeline at its fullest.

In graduate school, my academic father, Mehmet Toner, encouraged me to become a researcher and a professor when it wasn’t anywhere on my radar. It’s so important to have people to take the time to say to someone you believe in, “You would be good at that.” As a mentor now myself, I try and remember to do this and I encourage others to do the same. Ultimately, it may be the biggest impact we make.

Radiation Doesn’t Scare Me: Negative health effects vs. relocation trauma

By guest contributor and TEDMED 2015 speaker Holly Morris

This spring marks the 30th anniversary of the Chernobyl Nuclear Power Plant accident in Ukraine, the world’s worst nuclear accident. Today, Reactor No. 4 simmers under its “sarcophagus,” a concrete cover hastily built immediately after the accident, now cracked, rusted and leaking radiation. Its long delayed “New Safe Confinement,” the structure being built to cover the reactor, has been repeatedly delayed, and is now years overdue. This story of nuclear disaster is in its early chapters.

Inside Chernobyl’s 1000-square-mile “Exclusion Zone,” known simply as “the Zone,” lies the most contaminated land on Earth, including hundreds of unmarked (and unmapped) burial sites where machinery from the clean up after the 1986 accident was dumped. These days, Ukraine’s four other nuclear power plants also dispose of their spent fuel inside the Zone.

But amidst the complicated real-life equations and compromises–where science and politics meet to duke out the viability of nuclear energy–the long, deep, human parable of Chernobyl is often lost. That story is partly embodied in an unlikely community of some 100 people, called “self settlers” who, today, live inside the Zone. Almost all of them are women in their seventies and eighties; they are the last of a group of some 1200 people who defied authorities and illegally returned home after being evacuated.

“Radiation doesn’t scare me. Starvation does," states Hanna, a babushka of Chernobyl (photos credit: Yuli Sollsken)

“Radiation doesn’t scare me. Starvation does,” states Hanna, a babushka of Chernobyl (photos credit: Yuli Sollsken)

One self-settler, Hanna, told me how she snuck through the bushes back to her village in the summer of 1986. “Shoot us and dig the grave,” she told the soldiers who nabbed her and other family members, “otherwise we’re staying.” Then she handed me a chunk of warm salo, raw fat, from her just-slaughtered pig.
Why would they choose to live on deadly land? Were they unaware of the risks, or crazy enough to ignore them, or both? These women see their lives, and the risks they run, decidedly differently.

It’s all about context– the women had already survived Stalin’s famines, and Nazi atrocities, and were simply unwilling to leave their homeland in the face of an enemy that was invisible–radiation.

So long as they were well beyond child bearing, self-settlers were eventually allowed by officials to return. Five happy years, the logic went, is better than fifteen condemned to a high-rise on the outskirts of Kiev. Despite the hardship, the wolves, the radiation – all of the women chose to return to be near the graves of their parents, and babies; to the villages, they say, where they know, exactly, where the sun will rise. There is a simple defiance common among them: “They told us our legs would hurt, and they do. So what.”
The benefits of hardy live-from-the land realities are complicated by an environment laced with radioactive contaminants such as cesium, strontium and americium. The upper estimates of the eventual Chernobyl death toll are in the tens of thousands. Thyroid cancers are sky high, and that Chernobyl evacuees have suffered the trauma of relocated peoples everywhere, including anxiety, depression, alcoholism, and disrupted social networks.

To be clear, the nuclear accident was a miserable tragedy that clobbered the health and economy of a region. But relocation trauma is another, less-examined fallout of Chernobyl. As one Chernobyl medical technician put it about the old people who relocated: “Quite simply, they die of anguish.”

Home is the entire cosmos of the rural babushka, and connection to the land is palpable. Chernobyl babushka sayings go, “Those who left are worse off now. They are all dying of sadness,” “When you live outside your village, you leave your soul,” “Motherland is Motherland. I will never leave.” The surprising truth seems to be that these women who returned home have, according to local officials and journalists, (and the women themselves) have outlived their counterparts who accepted relocation– by some estimates, up to 10 years.

How could this be? Certainly, their exposure at an older age put them at smaller risk. (Younger animals– this includes humans– are more susceptible to the effects of radiation.) But consider a less tangible though equally powerful idea. Does happiness affect longevity? Is the power of motherland, so fundamental to that part of the world, palliative? Are home and community forces that can rival even radiation? I believe so and without exception, the women of the Zone do too.

I’m traveling to Ukraine this spring to screen “The Babushkas of Chernobyl” with the film’s central characters, Hanna Zavorotyna, Valentina Ivanivna and Maria Shovkuta. They continue to gather mushrooms, brew moonshine, and scare off wild boars who would mess with their gardens. Radiation or not, the babushkas are at the end of their lives. In their 80’s now, they are frail, and smaller; it feels as if they are a whisper away from being gone. But their existence and spirit will live on, leaving us wondering about the relative nature of risk, about transformative connections to home, and about the magnificent tonic of personal agency and self-determination– unexpected lessons from a nuclear tragedy.

Check out the Babushkas of Chernobyl trailer:

The Babushkas Of Chernobyl Trailer by Holly Morris on Vimeo.


 

Holly Morris on the TEDMED stage (photo credit: Sandy Huffaker for TEDMED)Watch Holly’s TEDMED talk, Chernobyl: Flourishing lives in the dead zone.

Follow her @HollyMorris and learn more about Holly’s other projects at HollyMorris.com.

Update: TEDMED 2016 Sessions Announced!

What If? Logo

A simple question can unleash the imagination. At TEDMED, we believe that’s what it takes to spark widespread change. That’s why the TEDMED 2016 event theme is “What If?”. But, TEDMED 2016 isn’t simply about raising new questions–it’s about the important, creative conversations that follow.

If you look closely at this year’s event logo, you’ll notice that the question mark is comprised of a medley of punctuation marks that, considered together, represent rich dialogue full of questions, discovery, and possibilities. In the spirit of asking “What If?”, each of the seven sessions that drive the TEDMED 2016 stage program is grounded in a single, stimulating question. These questions will inspire our multidisciplinary community to engage in conversation and embrace the power of curiosity and collaboration.

We are delighted to share the sessions below:

 

Session1

What if social and environmental  factors are inextricably entwined, not just with the culture of health, but also with its outcomes? Where we are born, grow, live, work, and age– these circumstances can shape not only individual health, but the health of a community. But, that’s not where social determinants of health stop–there’s a whole social side to health we’re still discovering. Learn more…

 


 

Session2What if the outer edges of human experience could provide solutions to everyday challenges? Often, our mental constructs and perceived limitations hinder our search for inspiration. What if we made a point of venturing into the most unusual and unexpected places for answers? Learn more…

 


 

Session3

What if visionaries ruled the world? In a rapid-fire series of creative, short-form talks, dozens of inspiring health entrepreneurs will share how their ideas and innovations will change everything. We’ll be sharing more details about this session next week – stay tuned!

 


 

Session4

What if we could expose and confront invisible threats to health? It’s getting easier for us to monitor and keep track of our health data–but what about the influences on our health that we can’t (or won’t) see and measure? Learn more…

 


 

Session5What if we possess the knowledge to be the architects of our aging and (eventual) deaths? We’ve made significant strides in understanding exactly what happens to our bodies as we age. Might we master our bodies and soulful understanding of self to the point that we will determine the way we die? Learn more…

 


 

Session6

What if we re-examine the way we frame health challenges? Might this approach yield effective solutions to seemingly unsolvable problems? As Marcel Proust wrote, “The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” Learn more…

 


 

Session7

What if we found beauty while confronting difficult truths? As the adage goes, every cloud has a silver lining. Beauty in suffering may not be apparent at first, but what can happen when we stumble upon it and then share it with others? Learn more…

 


Once again, we are deeply grateful to this year’s Editorial Advisory Board and Research Scholars for dedicating their time, expertise, and wisdom to helping us designing this year’s stage program.

Over the next few weeks, we’ll be unveiling the incredible speakers, innovators, artists and performers who make up this year’s stage program. We’ll also be sharing more details about the event. To keep up with our announcements, please be sure to sign up for our newsletter and subscribe to the TEDMED blog.

We hope you’ll join us this November 30-December 2 in Palm Springs, CA. If you haven’t done so yet, be sure to register and secure your spot at TEDMED! If you have any questions, please email admissions@tedmed.com.

A Culture of Health Includes Everyone

This guest post is by Sam Vaughn, TEDMED 2015 speaker and Neighborhood Change Agent in the City of Richmond, California. You can watch Sam’s TEDMED talk here.

Sam Vaughn 2A person can have a healthy heart and diseased lungs, or a healthy brain and kidney failure. Would you consider that person healthy? Society is quite similar. Until we create a culture of health that is inclusive of all citizens, we cannot consider ourselves a healthy society. Thus, we cannot create a healthy society until we deal with issues of personal security, like crime and gun violence.

As I mention in my TEDMED talk, at the Office of Neighborhood Safety, we identify individuals who are most likely to be perpetrators or victims of gun violence. We work with them through a program called the Operation Peacemaker Fellowship, a seven-step process to help them become self- and socially-aware of their roles in society, and to affirm their God-given and Constitutional rights to happy, safe and successful lives. Perhaps most importantly, we meet and accept them where they are, with no judgement, and recognize the social, structural and strategic injustices that they have faced most of their lives. We challenge them to accept that, despite those injustices, they still have a responsibility to themselves, to their families, and to their communities to do better.

The first step of the Fellowship, and one that is vital to our success, is for us to build a relationship with these individuals. Most young people don’t care what you know until they know that you care. Once trust is established, we create a LifeMAP with them, helping them see that a different future is possible by showing the changes that others have made. We help them envision a future as bright and fulfilling as they can possibly imagine, and we connect them to resources and service providers that can help make that dream become a reality. We connect them to mentors and coaches, a group we call Elders, who are older successful men of color who have successfully made changes in their own lives, and are now reaching back to help others.

Vaughn Picture Request (1)

Sam Vaughn, Devone Boggan, and Fellows on a retreat at the Teotihuacan Pyramid of the Sun, Mexico City.

Additionally, in a step riddled with great risk but even greater reward, we take the Fellows on trips around the globe, to help them see how good life can possibly be and get them addicted to living. The catch to this amazing travel opportunity is that they must travel with someone from what would be considered a “rival community.” As they begin to see themselves, and the world they live in, in a different light, they start to see each other differently as well.

Because we believe hard work should be rewarded, we provide a stipend to our Fellows, a practice that is seen as controversial by some. Critics frequently disparage this, claiming that we are paying criminals not to commit crime. Let me counter that by saying that, when I was young, my parents would give me $5 for every “A” I got on my report card. Were they paying me to go to school? Absolutely not– they were rewarding me for working so hard. We aren’t paying these young men for what they aren’t doing. We are rewarding them for what they are doing.

Our final step is to introduce our Fellows to mainstream society and the workforce through subsidized employment. In this stage, they develop a strong work ethic, effective workplace communication and the skills of being a team player. Eventually, they become employable by their own means, without subsidy.

Frankly, our goal is to provide these individuals with what every young person in this country receives when they grow up in a healthy, nurturing community. We’ve been successful. Of those who have participated in our Fellowship, 94% are alive, 84% haven’t been injured by a firearm, and 79% have not been suspects in new firearm-related crimes. During the period of our interventions with these youth, the city of Richmond, California has experienced a 66% reduction in firearm assaults and a 55% reduction in firearm related homicides between 2007 and 2015. By attending to these young men who are and have been traditionally underserved and abandoned by the mainstream services platform, the City of Richmond is creating a culture of health in a once dangerous city that is today a much more desirable place to live, learn, work and play.  

Announcing TEDMED 2016: What if?

Tough-minded skeptics and visionary dreamers agree on one thing: if we are going to change our world for the better, we must first imagine new possibilities.

As children, we’re encouraged to ask questions and dream big. But, as we become adults, our imagination is tamed by perceived practicality and social conformity. What if we let ourselves ask creative questions again? Where might our search for answers lead?

 

Albert Einstein quote

 

We believe that human creativity and imagination are at the heart of scientific inquiry and medical discovery, and that progress begins with a single idea. That belief is what inspired this year’s theme:

 

What If? Logo

 

TEDMED 2016 is about asking questions, the importance of conversation and dreaming big. It’s about imagining the possibilities that motivate progress in health and medicine, which can be summed up in two simple but powerful words: “What If?”

We’ll explore questions like:
– What if we created beauty in response to life’s most difficult challenges?
– What if we expose and tackle invisible threats to health?
– What if we were the architects of aging?
– What if we treated pandemics as though we lived in a borderless world?
– What if health is determined not by how, but where, we live?

At TEDMED 2016, we will experience the unmatched power of asking “what if” in health and medicine. Our program will explore a range of topics including unique approaches to understanding increasing longevity, novel visualization techniques for medical education and clinical care, therapeutic uses of 3D printing, innovations in treating mental health, and creative ways to embrace our humanity. Click here to see the priority topics considered for the TEDMED 2016 program.

We’ll begin announcing this year’s lineup of speakers, performers and innovators in the coming weeks. We look forward to sharing more details with you, the TEDMED community.

Join us this November 30–December 2 in Palm Springs, CA, as we explore provocative and inspiring questions and discussions that drive us toward a healthier world. If you have any questions about attending, please email admissions@tedmed.com.

Taking a new look at psychedelics: Q&A with Roland Griffiths

At TEDMED 2015, psychopharmacology researcher Roland Griffiths shared intriguing research findings about psilocybin, a naturally occurring psychedelic substance that has been used for hundreds of years within some cultures for medical, healing, and religious purposes. We reached out to Roland with some questions about his current research.

We’re especially curious about your research into the connections between psilocybin, spirituality, and consciousness. Can you tell us more? Are there any updates?

_JHU9762 RRG office copy_FotorIn ongoing studies, we’re examining the effects of psilocybin in long-term meditators and in religious leaders from the major faith traditions. We’re also conducting two anonymous internet surveys. One is asking about experiences that some people report of an encounter with God, or the God of their understanding. Another is examining anomalous experiences, such as Near Death Experiences, that produce enduring changes in people’s attitudes and beliefs about death and dying. In both surveys, we want to compare spontaneously occurring experiences with psychedelically occasioned ones. Our hope is that these surveys will allow us to better understand such experiences and how they may differ across faith traditions and occasioning events (e.g. prayer, meditation, spontaneously-occurring, nature experiences, drug-occasioned, etc.).

Our research has shown that a single experience with psilocybin can produce personally meaningful experiences accompanied by enduring positive changes in attitudes, mood and behavior. We’ve recently completed a study suggesting that psilocybin decreases depression and anxiety associated with a life-threatening cancer diagnosis. We’re also following up on a pilot study that suggested the psilocybin may be helpful in treating drug addictions — in this case, cigarette smoking. Finally, we’re initiating a study to explore the efficacy of psilocybin for treatment-resistant depression. In several of our studies we are using fMRI brain imaging methods to examine the acute and persisting changes in brain function that occur after receiving psilocybin.

You’ve opened our eyes to the potential therapeutic benefits of psilocybin – but do they come with risks?

_JHU9895 cancer pamphlet copy_FotorAlthough most participants in our laboratory studies have positive psilocybin experiences, about 30% experience significant fear or anxiety sometime during the session. Even for that 30%, given our careful screening and support, persisting adverse outcomes are virtually non-existent. It can be a different story for haphazard use in the general population. We recently conducted an internet survey of almost 2000 people who described their single most challenging experiences after taking psilocybin. Almost 40% of respondents rated the experience to be among the five most challenging experiences of their lives (yet, curiously, often among the most meaningful of their lives). Notably, about 10 percent said they had put themselves or others at risk of physical harm during the challenging experience, most likely in response to fear or panic, and about 10% reported enduring adverse psychological symptoms lasting a year or more. The contrast between the survey results and the excellent safety track record of the laboratory studies underscores the need for careful screening, preparation, and support.

Why study mystical experiences? What does this work mean to you?

Many of the challenges facing the world today, such as the environmental crisis and hostilities within and between cultures, stem from a lack of appreciation for the profound interconnectedness of all people and all things. This sense of interconnectedness or unity is a core feature of the world’s ethical and moral systems. Our interconnectedness is also a core feature of the mystical or transcendent experiences that occur with high probability after the ingestion of psilocybin under appropriate conditions. Ultimately, systematic prospective study of mystical experiences and their consequences may be critical to the survival of our species and the healing of our planet.

Is there a thought or mantra that you repeat to yourself most often?

I try continually to cultivate deep gratitude for the astonishing mystery of consciousness — that we are aware that we are aware — giving rise in me to uplifting and sacred feelings of wonder about all that we do not and quite possibly can never know.

Watch Roland’s TEDMED 2015 talk, “The science of psilocybin and its use to relieve suffering,” 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.

Improving the script for caregiving

K&M PhotoboothIn this conversation between two improv actors, Mondy Carter steps into Karen Stobbe’s world and asks for her perspectives on what she thinks living with Alzheimer’s disease is like, and how we can harness the rules of improv to improve our caregiving.  Learn more about Karen and Mondy and watch their TEDMED 2015 talk here.

Mondy: Why do you think being in the moment with someone living with Alzheimer’s is important? I know what I think, but I am interested in how you see it.

Karen: People living with Alzheimer’s are experiencing short term memory loss. When you’re struggling to remember and trying to make sense of the world around you, life becomes very immediate – very  much in the now.  If we stay in the moment with them, it slows us down and brings us more into their world so we can see things from their perspective.

Mondy: That’s how I see your Mom’s experience with Alzheimer’s. You and I walk around with the context of our recent memories, and so the world makes sense to us. But her recent experiences don’t stay with her at all, and that void of information is filled with immediate sensations colored with the only memories that she does have – ones from long ago. Even though we can share the present, I have to be open to her particular present to be in the moment with her.

Karen: Exactly. When you are truly in the moment, you make yourself available to be present for any moment that arrives.

One of the hardest guidelines to follow in improv and Alzheimer’s is listening fully. To really understand a person with Alzheimer’s, I think you have to pretend the other person is the only one in the world as you listen to them. Like I do with you….

Mondy: You do? I must have missed that.

Karen: Perhaps if you listened more fully?

Mondy: Hmmm…sorry, I just got a text!

Karen: Ha. Seriously, though, think about how courageous it is to even try to communicate when you’re struggling to remember, fighting to follow a conversation, or piecing together fragments of memories to make sense of the world. If they are trying that hard, maybe we can try to be more present in our listening. There was actually a study done in nursing homes that showed 92% of the talking was done by those who work there, and only 8% by those who live there. Not a lot of conversations with the residents or listening by the staff is taking place.

Mondy: When I began improv, it was really difficult for me to stop working out my responses while the other players were talking. It’s hard to believe that just letting go of our own ideas allows us to come up with the best ideas. But, when you listen fully and have the other person foremost in your mind, the human brain is perfectly able to come up with what is needed immediately. Wouldn’t you say that listening is the bedrock of improvisation?

Karen: Yes. And isn’t listening something you have to actively practice?

Mondy: I had to, again and again. The “good” thing about doing improv on stage is that, when you don’t follow the guidelines, you fall on your face. There is a tremendous ego incentive to let go of your ego. If you don’t let go and listen, you crash and burn.

Karen: Which is basically what can happen in a caregiving situation.  If you don’t let go and listen, you won’t understand what the person with Alzheimer’s is trying to say. Misinterpreting their intentions or projecting our ideas can lead to frustration on both sides.

Mondy: Is that why so many people think aggression and anger are always a part of Alzheimer’s?

Karen: That’s a common misperception. People think everyone with Alzheimer’s gets to an “aggressive stage” or all “get angry.” That is not true. Most of those so-called behaviors are either their way of trying to communicate, or reactions to our poor behavior. Most of the time, their actions are really very normal for their perceived situation. We just don’t see it that way.

Mondy: Can you give me an example of that situation?

Karen: Imagine that it’s 6:00am and you’re comfortably lying in bed, in your home when… boom! A complete stranger walks in, opens your drapes and says, “Mr. Carter it’s time to get up!” How would you react?

Mondy: I would freak out and throw something at them. Do I have a taser in this hypothetical case?

Karen: Sure, there is a taser…

Mondy: Then I would tase them.

Karen: We do that to people living with Alzheimer’s all the time.

Mondy: We tase them?!

Karen: Ha! Stop it. No, we don’t bother asking them if they even have any desire to get up. We forget to re-introduce ourselves if we’ve been out of the room for a bit. We tell them they are in their room, but then we burst right in and order them around. In that situation, just about anyone would get upset or angry.

Mondy: I see. So that’s why stepping into their world, instead of forcing them to live in ours, is so important.

Karen: Yes – there’s so much we could learn from the basic rules of improv. Stepping into their world, being in the moment, and listening fully – these rules are the foundation of compassionate care for people living with Alzheimer’s.

JerodHarris_7127_Fotor

Healthy risk-taking for “at-risk” individuals

By Kayt Sukel, science journalist, TEDMED 2014 speaker and guest blog contributor

How can we encourage individuals from “at-risk” populations to take healthy  risks, when we can’t even agree on what risk actually is?

To start, I think we need to make sure that individuals, public health systems, and educational systems are using the same vocabulary when they discuss these kinds of issues. The word “risk” is used in so many different ways—and we tend to talk about it in rather contradictory extremes. “Risk is bad. It will lead to poverty, danger, and death.” Or, “Risk is good. It’s the key ingredient for happiness and success.” The truth, as is often the case, resides somewhere in the middle. As I learned while researching The Art of Risk: The New Science of Courage, Caution & Chance, work in neuroscience shows, more and more, that risk is a key component to learning and skill building. Yet, people still tend to talk around risk. There has recently been a more conscious effort, in the psychological and epidemiological communities, to try to use the term “risk” less—especially when the parties mean “impulsivity,” “sensation seeking,” or some other manner of negative behavior.

We also need to acknowledge that there is risk in every decision one makes, every single day. While the science shows that risk is necessary for learning and growth, that doesn’t mean it’s comfortable or easy. Saying yes to everything is exhausting. Being judged for the risks you take, especially when it somehow gets linked back to the color of your skin, your socioeconomic background, or your gender, is infuriating. Educators and other stakeholders need to understand that, for at-risk populations, putting yourself out there can come at a significant cost. Sure, in the long term, it may not be as great a cost as not pursuing an important professional or personal goal. But we should acknowledge that risk, especially one that makes you vulnerable to criticism and ridicule, is a scary proposition. And, if there isn’t some sort of scaffolding there (in the form of good mentorship, for example) it can be hard for at-risk individuals to see what the long term benefit of risk-taking could be. It’s important that we collaborate, as a community, to make sure that scaffolding is there–for everyone–so we do have room to encourage healthy risks.

The good news is that already have the tools in our arsenal to encourage healthy risk-taking in all populations. We’ve had them for a long time. It’s as simple as providing safe arenas in the arts, sports, and sciences where students even as young as elementary age can learn how to question, to innovate, to fail, to engage, and to move forward.

I know, it may seem like I’m contradicting myself. Risky behavior in safe arenas? What does that even mean? To me, it’s a matter of giving individuals, all individuals, opportunities to test themselves in new ways. Giving them places to do it where the cost of failure is not too great to bear. Time and time again, we’ve seen that music, art, theatre, science clubs, sports, and other extracurricular activities all provide opportunities for individuals to try new things and really work at the edge of their performance ability. This teaches those students key lessons in emotional regulation, problem solving, teamwork, personal responsibility, and perseverance. If we can make these arenas more inclusive, it’s there that we can empower females (both cis and trans) and LGBTQ populations—as well as other at-risk populations—to better understand their own strengths and weaknesses and, ultimately, develop really healthy risk-taking skills. The kind of skills that transcend the school and playground—and help them become more successful in everyday life, no matter what kind of goals they decide to pursue.

Unfortunately, these are exactly the kinds of programs that we keep cutting, both inside and outside schools. If we continue along that vein, it will not only be to the detriment to at-risk populations, but to society as a whole.

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kaytJournalist and science writer Kayt Sukel shared insights into the neuroscience of risk-taking and how play during childhood and adulthood impacts the way we make decisions as adults in her 2014 TEDMED talk, Eliminating Penalties for Playing Out of Bounds. Check out her new book, The Art of Risk: The New Science of Courage, Caution and Chance.