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.

Patient as consumer: What does it mean for healthcare?

Patient empowerment can be a double-edged sword. From hospitals and insurance companies to doctors and patients themselves, much of the medical system increasingly treats patients as “customers” or “consumers,” terms that some people love and others hate. If patients are customers, does that mean “the customer is king” or does it mean “buyer beware” — or both?

If patients retain their traditional role, does that mean doctors are in charge? Are both in charge somehow? How is “power” shared among all stakeholders and how should it be shared?

The changing role of the patient was voted the number one Great Challenge in health and medicine by the TEDMED community in 2011, one of 20 complex issues with broad impact that needs cross-disciplinary understanding and discussion to manage.  Join the online interactive Challenges community now to share your thoughts on patient engagement and to ask questions of thought leaders in the field.