AUGUST 19, 2016 BY MOLLY SKUBAK
Patient Partner News: Sharing Your Story
“All people are storytellers,” says David Brauer, a master storyteller and member of the Scottish Storytellers Guild, The Society for Storytellers (UK), Three Rivers Storytellers, and the West Virginia Storytelling Society. Brauer recently sat down with PaTH team members to discuss the importance of patients sharing their stories with the MyPaTH Story Booth.
The MyPaTH Story Booth offers participants a quiet space to record personal stories about their experiences with health care. Patients can share their stories in the professional-grade audio recording booth or over the phone. PaTH researchers will then be able to review the recordings to better understand patient perspectives. The stories will also be used as a resource for patients.
These narratives are an invaluable resource to help others understand patients’ experiences with illness, coping, and seeking health care. They also provide meaning, context, unique patient perspectives, and insight into areas in which health care delivery can be improved, especially for marginalized patients.
Brauer notes that the story booth is an excellent opportunity for patients to share their thoughts and perspectives with some of the country’s top doctors and researchers, who often can’t spend as much one-on-one time with patients as they’d like.
Jim Uhrig, a member of PaTH’s Steering Committee and a patient partner with the Idiopathic Pulmonary Fibrosis (IPF) cohort, shared his story through the story booth and encourages others to do the same “to help other patients know how others handled their disease.” He says the booth also gives participants an opportunity to better express their feelings and perspective.
Jim Carns, also an IPF patient partner, agrees. Although he hasn’t had the chance to use the story booth because it hasn’t visited Penn State yet, he says it’s important for patients to share their stories to help others who have been diagnosed. His wife, Karen, points out that it’s also important for those who are caring for loved ones to share their stories.
“It’s important for you to be able to share what you’ve gone through like going to appointments, taking notes, trying to understand what the doctors are saying,” she says.
“It shows that there are other people out there who really understand what you’re going through,” adds Carns. “The more information we can get out there about this disease and what patients can expect, especially coming from those who have been there, is nothing but a plus in my life.”
The story booth is intended to promote stakeholder engagement at PaTH institutions, and researchers hope to develop an archive of patient stories through the project. The MyPaTH Story Booth will be in the lobby of the Falk Medical Building in Pittsburgh until the fall, then will move on to Penn State Hershey Medical Center, and from there to other PaTH sites. Be sure to like the story booth on Facebook. If you’re interested in sharing your story, you can contact the story booth team at firstname.lastname@example.org.«—- Back To News