MCSMN Blog

November 2, 2018

Stories Matter: Why You Should Embed Patient Stories at the Heart of What You Do – Experts by Experience

By Marie Ennis-O'Connor

From time to time, the Experts by Experience series features columns–Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on patient experience.

 “Stories are the most important thing in the world. Without stories, we wouldn't be human beings at all.” ― Philip Pullman

There is something universal that occurs in the brain when it processes a story. Story engenders empathy. It’s the best tool we have for putting ourselves in another’s shoes. When we learn someone’s story, we feel connected to them. Neuroeconomist Paul Zak conducted research which showed that reading humanistic stories actually changes what is in our blood streams. He took blood samples of subjects before and after reading a story about a father and his terminally ill son and found that after reading, the subjects’ blood levels contained an increase of two chemicals–cortisol, which focusses our attention, and oxytocin, the human bonding or empathy chemical.

Zak’s research suggests we can use story to build a bridge of empathy and compassion in healthcare. To enter into an experience which often lives outside our own understanding requires finding a point of entry. Through story we begin to discover the commonalities we share as humans. To quote Jay Baruch M.D., “Story becomes the ground that patients and healthcare professionals travel together.”

Seeing “this patient”

There is no such thing as a one-size-fits-all patient–yet the health care industry has a tendency to think otherwise. Mayo Clinic endocrinologist and Professor of Medicine, Victor M. Montori, M.D., has referred to seeing “this patient, not patients like this.” In order to see this patient we need to see beyond the one-size-fits-all label. In strictly limiting its focus to narrow biological terms, medicine has largely overlooked the personal, individualized experiences of illness and has lost sight of the person with the illness. Patient narratives act as a foil against stereotyping and reductionist thinking, allowing us to see that a patient isn’t a disease with a body attached, but a life into which an illness has intruded.

The Experts By Experience series, a collaboration by Mayo Clinic and Inspire, offers a window into the human heart of medicine. Narrating the experience from the receivers’ point of view, the stories illuminate lives interrupted by medical crises. They point to aspects of care and cure beyond the standard medical model of disease. Within these stories you will find a great diversity of expertise and richness of experience than any bio-medical narrative of disease will teach you. To quote research professor Dr. Brené Brown, “Stories are just data with soul.”

Embedding stories at the heart of your work

We call storytelling, the art of storytelling, but listening is an art too. In her TED talk, Sayantani DasGupta, M.D., says listening to another person is an act of profound humanity. Listening shouldn’t be a passive experience–it is a choice we make to pay attention with purpose, listening from a deep, receptive and caring place in ourselves. As professionals working in health care communications, a fruitful place to begin work on improving patient communication is with the quality of our listening. Here are some things we can do to listen more deeply and embed patient stories at the heart of our work.

  • Immerse yourself in patient and caregiver stories. They are the fabric and context of our work, allowing us to develop empathy and an appreciation for the narrative complexity of the lives of the patients and families we serve.
  • Recognize that patient stories are teachable moments,  providing you with rich insights into the embodied experience of illness. Listen for what lies “between the lines.”
  • Seek out a wide diversity of experience. Pay particular attention to those stories that are outside your present sphere of knowledge and understanding. Allow them to challenge any prejudgments you may carry.
  • Develop an ear for how a patient speaks so you can communicate with them in ways that will resonate best with patients and their families. Listen to the words, tone and syntax they use to describe the experience of being ill and seeking medical care. Replicate that language and tone in your own communication with patients.
  • Finally, always be mindful that when someone shares a personal story, they are sharing a piece of themselves. Patient stories are not a commodity. They are more than words on a page. Behind every story is a human with a deeply personal experience, that we are privileged to share.

As authentic human experiences, stories echo our humanness. They have the power to connect across differences and unite us through a shared sense of purpose and passion for the work we do. When you allow stories to touch your hearts and minds, you expand your horizons–you walk along the same path with the patient. In the words of Jay Baruch, let story become the ground we walk together.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Marie Ennis-O’Connor is a digital communications strategist and internationally recognized speaker and writer on emerging trends in digital health and participatory medicine. She serves on the external advisory board of the Mayo Clinic Center Social Media Network, and on the board of trustees for the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide.  Marie has worked with medical teaching faculties in Ireland, the USA, and Australia, on programs to integrate narrative medicine practice in medical education. Her work is informed by her passion for embedding the patient voice at the heart of healthcare systems and values. You can find her on Twitter at @JBBC

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Tags: Experts by Experience, Patient Involvement, story telling, Strategy, Tactics & Best Practices

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