Healthcare activist, speaker and author Sue Robins explains why patient stories are so powerful and the impact they can have on both patients and healthcare staff.
As a former cancer patient and the mother of a young disabled man, I was intrigued by your May 2023 editorial called “Passing the Baton” by David Wells. It described Harvey’s Gang, where sick children who require laboratory services are given the opportunity to have a behind-the-scenes tour of facilities.
What if healthcare opened its curtains and both patients and professionals got a behind-the-scenes peek? For patients, that would be a tour like the Harvey’s Gang initiative. For health professionals, whether they have direct patient contact or not, it might be an opportunity to listen to and learn from patient stories.
This swapping of perspectives could lead to what I pine for as a patient and caregiver: to be seen and heard as a human being, and ultimately to have my perspective understood.
I know you chose to work in biomedical science for your own unique reasons. Perhaps it was because you had a family member who was ill. Or as a young scientist you dreamed of making a difference in patients’ lives.
Patient stories can remind you of your “why” behind choosing the biomedical field. Patients are ultimately at the heart of all the work that you do, no matter how far removed you are from patient care. Like Harvey’s Gang, providing space to reflect on patient stories offers a glimpse into another person’s life.
Following is an excerpt from my book Ducks in a Row: Health Care Reimagined.
There are many terms for stories in healthcare: case studies, medical histories, narratives, and experiences. Stories are the way that patients talk about their experiences. We all have a story to tell, if only there was someone to listen.
There is evidence that stories are important tools for education. I’m not out to prove the power of stories but think of the last time you read a book, watched television, or went to a film. As human beings, we are all drawn to stories.
About the idea that stories are soft and fluffy and therefore easily dismissed:
The phrase “soft evidence” is also used to distinguish patient feedback from the “hard evidence” of statistics, says the Patient Experience Library.
Being a soft person myself, I don’t think there is anything wrong with soft. I’d rather sleep on a soft pillow than a hard floor. However, the words soft, anecdotal, qualitative, and stories are not respected in healthcare. The soft is dismissed for the hard.
The pandemic has shown the whole world knows how all-consuming healthcare can be. What is missing from the Public Health Officers’ speaking notes are stories. People with COVID are referred to as cases. People who have died of COVID are deaths.
Human beings have been distilled down to numbers because you don’t feel anything for numbers. This is a purposeful public relations tactic. It is meant to dehumanise the suffering of the pandemic. Not talking about people who’ve had COVID or people who have died from COVID depersonalises them. They are numbers and not people.
Humanity in healthcare must be reclaimed…the way we break the silence is by telling our stories.
My call to action for you is to think of ways to incorporate patient stories of healthcare experiences into your work lives. This might be as simple as offering a video, like Cleveland Clinic’s Empathy: The Human Connection to Patient Care, to your staff orientation sessions or starting a book club to read a book like Paul Kalanithi’s When Breath Becomes Air. Engage patient speakers to teach students or to offer stories at conferences or professional development events.
Incorporating stories into your work shines a light onto how much patients and professionals have in common. My one caution is to purposely seek out health stories from people who experience illness but who are not health professionals themselves, like Between Two Kingdoms by Suleika Jaouad or The Cancer Journals by Audre Lorde.
Think of ways to incorporate patient stories of healthcare into your work lives
Stories break down the stoic walls of professionalism that often surround the hearts of staff. Ultimately, having an understanding of each other will humanise our often cold, depersonalised healthcare system.
The way out of the chaotic storm of illness is to tell stories. The best sort of people are those who create space for stories. They can sit with an uncomfortable story without minimising it, interrupting, looking for the bright side, correcting the storyteller or running away. Encouraging patients to tell their own stories in their own way paves the road towards healing.
To paraphrase the poet Rumi – beyond the data and research, there are fields of stories. I’ll meet you there.
The Biomedical Scientist magazine is planning to publish a feature based around patient stories and the impact that they can have on the biomedical science workforce. If you would like to be involved in the feature, or know a patient who would like to tell their story, please email the editor on [email protected]
Image credit | Istock