National Patient Advocate Foundation today launched the fourth addition to its virtual advocacy curriculum, focusing on story-telling and narrative medicine. The learning path for this curriculum includes three new modules featuring guest speakers Rita Charon, MD, PhD; Olga Lucia-Torres, JD, MS; and Kathlyn Conway.
NPAF designed the advocacy curriculum for advanced advocates to sharpen their skills while being exposed to a variety of perspectives across the patient advocacy community. The storytelling path is designed specifically to educate patients and caregivers on the power of their voice and to support ongoing opportunities to tell their stories.
“We use storytelling and narrative medicine approaches in a number of our outreach and engagement efforts, including skilled communications workshops, story slams, and now our advocacy training modules,” said Jamie Trotter, associate director of patient advocacy and engagement. “In every case, opening the doors to letting people tell their stories, helping them think about different ways to do this, has produced powerful, rich, compelling results.”
Following the completion of the new modules, learners will have an opportunity to participate in series of writing workshops with faculty and field experts, culminating with a Story Slam in Spring 2023.
The modules can be accessed through the NPAF website. A description of the new modules is available below.
Reading and Writing Illness Narratives
Faculty: Kathlyn Conway, Author & Psychotherapist
In this module, author and psychotherapist Kathy Conway leads learners through the powerful journey of writing illness narratives. Learners will reflect on their own experience with illness and respond to prompts intended to invoke meaningful written narratives that promote personal healing and storytelling.
About Kathy Conway: Author Kathlyn Conway, a three-time cancer survivor and herself the author of an illness memoir, believes that the triumphalist approach to writing about illness fails to do justice to the shattering experience of disease. By wrestling with the challenge of writing about the reality of serious illness and injury, she argues, writers can offer a truer picture of the complex relationship between body and mind.
How to Best Tell Your Medical Story
Faculty: Olga Lucia-Torres, JD, MS
Many patients often feel challenged and intimidated by the small amount of time allotted for interactions with providers. Having the skills to efficiently articulate what matters most to you or your loved one is a key skill in self advocacy. In this module, learners will understand what it means to be a “professional patient” and effectively tell your medical story.
About Olga Lucia Torres: As a first-generation Latina, one of the eight founding lawyers of the Bronx defenders, and now a lecturer in the Narrative Medicine program at Columbia University, Olga Lucia also identifies as a patient advocate, ambassador for the Lupus Foundation of America, and mother of a miracle daughter. She’s been published in the New York Times, Parents Magazine, and multiple other publications about what it’s like to live in New York City as a person with disabilities and with all her medical conditions. Olga Lucia hopes to inspire others to not be defined by their illnesses or limitations.
Radical Listening: Space, Time and Person
Faculty: Rita Charon, M.D., Ph.D.
The first two modules of this curriculum have focused on key skills in written and verbal storytelling. To round out the series, provider and scholar Dr. Rita Charon leads learners through the skill of active “radical” listening.
About Dr. Rita Charon: Rita Charon is a general internist and literary scholar who originated the field of narrative medicine. She is Professor and Founding Chair of the Department of Medical Humanities and Ethics and Professor of Medicine at Columbia University. She completed the MD at Harvard in 1978 and the PhD in English at Columbia in 1999, concentrating on narratology and the works of Henry James. Her research focuses on the consequences of narrative medicine practice, narrative medicine pedagogy, and health care team effectiveness.