Voice art aims to capture the human side of healthcare

“I feel like my health is not her first priority…so I have to make it mine.”

“For a quadriplegic like myself, your muscles aren’t working correctly….your body doesn’t allow you to pick up a fork the way you used to pick up a fork.

“Four grand was cheaper than me getting health insurance.”

These are just a few quotes from Patient Translations, a multi-faceted art project that will be shown at TEDMED 2013.

The work includes a visual art installation, recording studio and voices of people talking about the experience of being a patient, supporting a patient, or managing health. Public users can use an iOS app and website to hear patients’ voices as well as to share their own stories.

The work was created by visual artist Kelly Sherman and sound artist Halsey Burgund.

“It was a confluence of interests,” Sherman says.  “I’ve made a lot of artwork that tells stories through language and both of us are really interested in slightly taboo subjects, things that are a little bit more laden emotionally.”

Burgund agreed that the topic of health lends itself to poignant storytelling.

“There is anxiety and fear for what’s going to happen to yourself or people you love.  It’s these sort of moments where people are really to express a lot about who they are as individuals,” he says.

The work also gave the artists a chance to portray a universal though often hidden experience, they say.

“Health is so connected to everything we do daily. A lot of people say, ‘I don’t have any healthcare stories,’ but as soon as you start talking with them, they remember, ‘Oh, there was this time I had to bring my kid to the hospital, and it was so nerve-wracking,’ ” Burgund says.

Conversely, patients who have had traumatic experiences or are dealing with a chronic disease may be less likely to discuss its pervasive life influences, Burgund says.

“It was something that was different about these patients’ lives, but they couldn’t talk about it at work, for example. There was this kind of social veneer preventing it. So being able to share what that experience felt like was probably cathartic,” he says.

To share a health story, download the Patient Translations app or visit the website.

Examined Lives: Stories from the Great Challenges

As medicine and science enter the era of quantified self, a parallel movement is growing: A reflexive self, as revealed in the stories we tell to others.

In medicine, listening to stories may help clinicians better understand patient symptoms and needs, thereby giving them better clues as to how to treat. Narrative medicine encourages a holistic view, a “whole-patient” treatment that balances the disease-specific, specialty-centric mode of medicine that prevails in the U.S., and the formulaic task of updating electronic medical records that can erode the personal, intimate aspect of provider-patient relationships.

In science, narrative helps explain a language of details and theory that can seem all too arcane and abstract to a lay audience — even though they’re constructed in an effort to make sense of our existence and our universe.

An Aid to Learning and Healing

“Healthcare’s challenges will be met through relationships and through story, connecting all through the power of narrative,” says Margaret Cary, a physician who teaches personal essay and narrative medicine at Georgetown University School of Medicine.

Writing things down may be helpful for providers, she says. “What I find is that when my physician students write stories they have a way to process what previously might not have made sense to them,” she says. “When you write and tell a story, current neuroscience says that it uses more parts of your brain than reading or listening.”

And when it comes to patients, Cary says, “There’s a healing process to talk about illness. We want to be connected; we want to be heard. I know a woman who volunteers at an organization for Latina women who have cancer.  A third of her support group is terminal. And the reason they’re there is they want to share their stories with others.

“It turns out that in terms of keeping us happy and to be satisfied, doing things for others works better than just going and buying something for ourselves.”

A Gathering to Explore Storytelling in Science

In the end, stories help us integrate the intricate workings of the physical world with our humanity. How do we apply these powers to the bigger picture, to understanding how science and medicine affect groups and systems?

On the afternoon of Friday, April 19th, TEDMED Delegates will explore the power of storytelling during the first Great Challenges Day at George Washington University. Delegates will explore how personal, anecdotal views can help us all come to grips with some of health and medicine’s most complex issues, revealing the holistic view needed to grapple with these widespread, systemic problems.

To preview the Day and move forward with our own conversations about the Challenges, TEDMED is beginning a new blog feature, Examined Lives: Stories from the Great Challenges. We’ll talk to patients, practitioners and those who have been directly affected by issues ranging from caregiving and sleep deprivation, to preventing childhood obesity and controlling medical costs.

Click here for more information on Great Challenges Day, and please watch for Examined Lives.