If you were really sick, with cancer, let’s say, or a debilitating eating disorder or heart condition that put you in the hospital, would you want to hear from other patients like you? Would you feel better sharing your story? A growing body of research suggests you would.
That’s the idea behind the SharingClinic, a kiosk stocked with a collection of audio clips from patients facing a range of illnesses. It’s set to launch as an interactive exhibit at the Massachusetts General Hospital Paul S. Russell Museum in January. The goal is to ultimately move the listening kiosk into the main hospital.
The project was born out of frustration with a medical system that no longer has the time to really listen to patients, says Dr. Annie Brewster, an MGH internist who’s been developing the listening kiosk for the past four years. Brewster (a frequent contributor to CommonHealth) is also the founder of Health Story Collaborative, a non-profit that helps patients and caregivers tell their own medical stories for therapeutic value.
Ultimately, the MGH kiosk will offer a range of storytelling from different perspectives: hospital patients, their families and friends, doctors, nurses, psychiatrists and others. A touch screen allows listeners to select stories by diagnosis, by theme or by perspective. Listeners will also be able to comment. Currently over 100 clips are already collected, and the process is ongoing. The software, designed in collaboration with computer programmer David Nunez, previously at the MIT Media Lab, allows for easy, regular addition of new content. A downloadable app is currently in development.
“SharingClinic will take on a life of its own, constantly growing and changing, shaped by story sharers and listeners,” Brewster said. Listen to few sample clips:
Why did she embark on all this? Brewster says: “Facing illness can be scary and isolating, and hospitals an be alienating. Our goals are to empower and connect individuals facing health challenges — to remind people that they are not alone — and to improve the culture of the hospital through storytelling.”
Brewster herself is involved in the audio collection and editing process, but has also recruited other providers to help; her goal is to transform the culture of the hospital through storytelling. So far, she has an MGH chaplain and two MGH social workers helping with story collection. Eventually, she envisions having an actual story-sharing “clinic” at MGH — a dedicated physical site, open at a regularly scheduled time, where patients and providers can come to share their stories. She hopes to staff this “clinic” with other healthcare providers across disciplines — doctors, nurses, mental health professionals and chaplains. Story clips will then be plugged into the kiosk, where they can be shared with any visitor to the MGH museum, part of the MGH campus.
“It would, of course, be ideal to have time for such story sharing within medical visits, but I don’t see this happening at any time soon given the structure of the health care system today,” says Brewster. “Because of this, we need to create other opportunities to share, feel listened to and feel like we are contributing to a collective conversation about illness and healing.” Continue reading