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Circling the Dome

Telling Their Stories

In the six-minute recording, the woman’s voice sounds warm and untroubled as she recalls the most frightening experience of her life: receiving a diagnosis of breast cancer.

“I was 49,” she says. “I had been an athlete—mountain bike racing and doing all sorts of things—so this hit me as quite a shock.” Now cancer-free for 12 years, she describes her treatment and reflects on her experience as a patient. “I learned a lot about the medical profession,” she says. “Many doctors are very supportive, but a lot of them are so busy. … They can’t read your mind, and you have to be very forward-thinking and talkative and ask questions and be part of your whole process.”

The audio—which does not include identifiable information about the patient, her medical providers or any hospital—is part of a project called MyPaTH Story Booth, which is collecting health care stories at a network of hospitals, including The Johns Hopkins Hospital.

The goal is twofold: to create a trove of patient and family caregiver stories for others who are going through similar situations, and to give clinicians information that helps provide better patient-centered care. Also, through the act of storytelling, patients create a narrative that might help them make sense of a difficult time in their lives, says research program coordinator Lilly Su, who staffs the booth and guides the interviews.