SharingClinic, To Help Patients Tell Their Stories, Opens At Mass. General Hospital

Four years ago, Dr. Annie Brewster had a vision.

Brewster, a Boston internist, who was diagnosed with multiple sclerosis in 2001, had become frustrated that a crucial element of medicine — the human connection between patients and doctors — seemed to be lost in the modern era of 15-minute appointments and overly burdensome record-keeping. As a patient and a doctor, Brewster yearned for a therapeutic arena in which patients could tell their full health stories and feel they were actually heard, not rushed out the door; and where doctors, as well, could share a little more with patients.

Now, with the launch this week of the SharingClinic, an interactive "listening booth" stocked with audio stories from patients facing a range of illnesses, Brewster is a little closer to realizing her vision. Housed at the Paul S. Russell Museum of Medical History and Innovation at Massachusetts General Hospital, Brewster expects SharingClinic will continue to grow over time as more stories are collected and added to the kiosk. Eventually, she says, trained staff will begin to facilitate the storytelling in regularly scheduled "clinics" in a way that research suggests might offer an actual health boost.

To be clear, the listening booth isn't a booth yet. It's an interactive screen that allows users to hear a range of stories from different perspectives: hospital patients facing very serious illnesses, their families and friends, doctors, nurses, psychiatrists and others. A touchscreen allows listeners to select the stories by diagnosis, theme or perspective. Currently, over 100 clips are 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 coming soon.

"My hope is that SharingClinic will fundamentally transform the culture of the hospital by encouraging and facilitating storytelling," Brewster said at the opening of SharingClinic at the MGH museum on Thursday night. "Hospitals can be cold, scary, lonely places. SharingClinic aims to build community and to lessen this sense of isolation."

Brewster spoke of the emerging field of "interpersonal neurobiology," built on the idea that empathy, and being attuned to the person you are talking to — really seeing and hearing them, with compassion and body language and eye contact -- "has clear biological impacts on the brain — how our brain and neural circuits change in response to our interpersonal interactions."

She also discussed fairly new research that suggests patients get a mental health boost when they frame their medical stories in a manner that puts them in the driver's seat; that is, when they feel they have some sense of control.

One of the social workers involved in collecting stories for SharingClinic, Barbara Olson, said that when patients go through the process of figuring out how they want to talk about their own illness and then tell their stories aloud, it "gives them a place to ponder what's happened to them."

One patient Olson worked with is Kathryn, a 68-year-old with end-stage renal disease who has been on dialysis for 10 years after a failed kidney transplant. Dr. Brewster, who is also a friend of mine, closed her talk at MGH with Kathryn's words. Here's part of the clip, with Kathryn choking back tears near the end:

You have these poignant moments that remind you of the goodness of people...Once I was in terrible pain in the hospital...the nurse came rushing in...she was very hassled that day...she was in a rush and was going to do a quick medication dispensation and be out the door. So she did her stuff and she was headed out...and she looked at me, and all of a sudden, she just stopped and she came over and she brushed the hair out of my eyes and she put her hand on my face and she stroked my face and i just thought, [it] didn't take the pain away, but it changed the whole day.

If you're interested in sharing your story, contact Brewster at: abrewster@healthstorycollaborative.org