Story Booth was created as a resource to support the PaTH Clinical Research Network’s mission to address questions and concerns that help communities make better health decisions using patient empowered research. The PaTH Network’s University of Pittsburgh team began engaging patients and collecting stories using an audio booth in the Falk Medical Building. The project then expanded to include phone-based recordings and a new audio booth site at Johns Hopkins Medical Center.
The Story Booth team is led by Kathleen McTigue but is comprised of several faculty and staff from multiple institutions, including Johns Hopkins University, the University of Pittsburgh, the Pennsylvania State University, and Stanford University. The project would not be possible without the support of partner organizations, including Family Voices, Genetic Alliance, and more.
Initially, Story Booth focused on collecting patient stories, but early in the project it was learned that collecting caregiver, healthcare provider, and research participant stories were an important aspect of this patient empowered research project. Story Booth highlights peoples’ stories from multiple backgrounds, ethnicities, and genders, as well as stories from people age 10+. Stories can be filtered by type of health/health care experience, part of the body discussed, type of disorder or condition, and whether a transcript is available.
Story Inspired Art
A unique way to engage others in this patient empowered research was the collaboration with artists at the University of Pittsburgh-Bradford. While MyPaTH’s Story Booth has an abundance of stories available, some stories were selected to be amplified through art. Artists at the University of Pittsburgh-Bradford created original art that was inspired by Story Booth stories. The goal of this collaboration was to intensify storytellers’ perspectives by drawing a larger audience and building a sense of connection with the storytellers. To view the virtual art show of this work, or to see the full collection of art, you can visit the Story Inspired Art – Story Book website. However, a select number of stories are highlighted below.
Disconnected From My Body
Disconnected From My Body is a piece created by University of Pittsburgh-Bradford artist Ada Griffon to amplify the story of a young woman who describes her journey of being diagnosed with Hashimoto’s thyroiditis. Although a seemingly healthy college athlete, she knew that something was not right. She struggled to gain the attention of her doctors and received multiple misdiagnoses. She discusses how she was dismissively told about her correct diagnosis and her journey to find compassionate doctors that both support and advocate for her. To listen to the full story behind Disconnected From My Body, click here.
I’m Grateful That His Illness Was Caught When It Was, But There Is Some Sadness That Comes With This Too
I’m Grateful That His Illness Was Caught When It Was, But There Is Some Sadness That Comes With This Too, a sculpture by University of Pittsburgh-Bradford artist Kaylee Brown, amplifies a wife’s story about her husband’s diagnosis and treatment for prostate cancer. She discusses how healthcare providers presented available treatment options for her husband’s cancer, from seemingly compassionate and thorough in the beginning to unaware of how extensive the decided upon treatment and recovery would end up being. She describes how a miscommunication regarding side effects, specifically becoming impotent following the surgery, has led to a rift in their marriage. Listen here for more of the story associated with I’m Grateful That His Illness Was Caught When It Was, But There Is Some Sadness That Comes With This Too.
The Most Difficult Part Has Been Waiting For Months On End For The Health Care I Believe I Need
The Most Difficult Part Has Been Waiting For Months On End For The Health Care I Believe I Need was created by Juliah Leammer, an artist at the University of Pittsburgh-Bradford, to describe a patient’s issues with access to mental health care. In this story, the patient describes how it took over a year to obtain a psychiatric appointment due to insurance regulations and waitlists, despite working in the mental health system. She expresses the need for more providers who are willing to work with lower-income patients and those without insurance. Visit The Most Difficult Part Has Been Waiting For Months On End For The Health Care I Believe I Need page to hear the full story.
Even Though They’re Acting Different, You Still Have To Take Care Of Them
Even Though They’re Acting Different, You Still Have To Take Care Of Them was created by artist Benjamin Koss and describes a young man’s grandmother’s diagnosis of Alzheimer’s. He discusses the difficulty of watching his family care for her through many phases of Alzheimer’s, including times when his grandmother would become emotionally abusive towards relatives. Listen to the entirety of his story, Even Though They’re Acting Different, You Still Have To Take Care Of Them, here.
These are just a few of the amazing stories shared by patients, caregivers, health care providers, and research participants as part of the patient empowered research project, Story Booth. You can listen to hundreds of stories via the Story Booth website or can take a deeper dive into the special collection, Story Inspired Art.