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The Power of Patient Storytelling #patientchat Highlights

Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest Kerri Sparling (@patientrev). Kerri was diagnosed with type 1 diabetes in 1986, sits on the Patient Revolution team,  and is working towards careful and kind care. The #patientchat community came together and shared their insights and best advice.

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Storytelling and Medicine

“Tell me a story.”

That’s something that any adult who’s spent time in the company of kids will have heard. Stories are how humans connect with, and make sense of the world, in childhood and beyond. Storytelling is how people communicate. “Here’s who was there, here’s what we did, here’s how we felt, and here’s what happened.” Language evolved to help humans tell stories.

When people are in an exam room, or a hospital room, their story is what matters most to them – their symptoms, their pain, their hopes for relief – and what is most important to the doctor or nurse hearing that story. Turning that patient story into a story of what to do next, and what might happen after that, is the clinician’s purpose in the relationship.

A medical history is a story

When you tell your story in the exam room, you really want the person listening – the doctor, the nurse, the physician assistant – to hang on your every word, right? Of course, the necessity to document that story in an EHR (electronic medical record) does mean that, too often, your audience will be multi-tasking, but that’s just a fact of 21st century life. The important thing is that your story is heard, and recorded, so that your health condition is properly addressed.

Have you ever prepared your patient “story” ahead of a healthcare visit? If you’re a medical professional, what storytelling skills have you worked on to make sure your patients understand, and can take action on, your treatment recommendations? Being face to face with another human person in this most human of settings is a great opportunity to put all your human-storytelling skills in play.

Storytelling 101 (in healthcare)

There are five elements to a good story:

  • What’s happening?
    • Why is the patient in the office/clinic, and what does the clinician already know about the patient – is there past history, or is this a new relationship?
  • What’s the conversation like?
    • In the case of the patient, that’s what his/her body is “saying” via symptoms. For the clinician, that’s asking clarifying questions about the “what your body is saying” conversation to correctly identify the source(s) of the patient’s condition.
  • Description. What are they see­ing, hear­ing, touch­ing, tast­ing, and smelling?
    • This is what both sides of the dialogue above contains: descriptions from the patient, repeated and clarified by the clinician, to nail down the specifics of what brought the person to the office/hospital.
  • Inner Monologue.What are they thinking?
    • This is where body language and non-verbal cues come in for the patient/clinician storytelling duet. How each side of the conversation picks up on cues from the other’s body language, eye contact, and facial expression adds nuance and contact to the clinical “story.”
  • Exposition / Narrative.What other infor­ma­tion does the nar­ra­tor (in this case, both patient and clinician) want us to know?
    • Have all the bases been covered, with all the symptoms described and all the questions asked by both sides of the story?

Taking your show on the road

In this case, the “road” is the clinical conversation. Preparing for the two-way clinical storytelling session is important for both sides of the equation (by the way, this is true in telemedicine and electronic messaging, too).

For patients, putting together a tight set of action and description items ahead of the conversation will help the clinician they’re telling their story to ask the questions that serve up the exposition and narrative that leads to the best treatment options.

For clinicians, be aware that body language and eye contact can reveal additional information about the patient’s condition. That means actually making eye contact, and directly observing the patient’s body in action (the physical exam!), to make the right diagnosis and treatment recommendations.

Presence of evidence

The science of medicine runs on evidence. There is an emerging practice of teaching storytelling principles in medical education that is serving up evidence that story is a key piece of the medical relationship. I’d say it’s foundational to shared decision making, since the information exchange that is central to that practice is all about the stories that both sides tell each other. Doctors are writing journal articles about storytelling, too, which add to the “science” of story in medicine.

Tell your story well. Your life (or the lives of your patients) depends on it!

Why Your Patient Story Matters

“Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.” North American Indian proverb

As a patient or caregiver you may be asked to share your personal story with others. Your story serves as a powerful tool for raising awareness and offering valuable insight into the patient experience. Stories can be a bridge between the technical, rational world of scientific practice and the experiential world of patients. Stories also create a shared sense of meaning and community in our lives, lessening the isolation many of us feel when faced with a chronic illness.

The Power of Story

Stories have existed in our culture from the beginning of time. We use stories to derive meaning from experience and to pass along knowledge and wisdom. Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses.

In 2010, a group of neuroscientists at Princeton University used an fMRI machine to monitor what was going on inside the brains of both story-tellers and listeners simultaneously. They discovered that whilst the speaker was communicating to the listener, both their brains showed very similar activity across widespread areas. Their brains were effectively ‘in sync’ with one another suggesting a deep connection between storyteller and listener.” [1]

Tapping the Power of Patient Stories

Humans have an innate desire to feel connected with others who live life through similar lenses. When I first started telling my own story on my blog Journeying Beyond Breast Cancer, I did so in the hope that others on the same path might find some resonance and the knowledge that they are not alone. Chronic illness can be an isolating experience but the very act of sharing our stories with others counteracts the isolation we so often feel. It carries within it the seeds of community and connection which makes us feel less alone in our journey. Diabetes patient advocate and blogger Renza Scibilia captures this feeling when she writes: “There are billions of stories in the world and when we find people we connect with, we reach out and want to hold on. I know that’s how I feel about the Diabetes Online Community – I hear familiar stories and want to grab onto them and the people who wrote them because they help make sense of my diabetes life.”

Patient advocate and author, Jackie Barreau, believes the importance of sharing her personal story lies in “the ability to connect, empower and help others. It is also uplifting and inspiring to hear of people’s hardships whether through illness or unfortunate life events and the positivity & optimism they convey”.   Not only can sharing your story lessen feelings of isolation and open up new avenues of support, it can also offer vital diagnostic clues when others are searching for answers. Jackie explains, “through my volunteer work with for example, the Unicorn Foundation, as an admin for an online patient support group I see first-hand patients joining our group due to lack of knowledge and misinformation provided by their general practitioners and also physicians.”

The National Gaucher Foundation of Canada has coproduced an excellent storytelling toolkit with rare disease patient advocacy organization, Global Genes. It states that “medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing.” Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path. “As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path.”

How To Tell Your Story

Whether you tell your story through public speaking, print or online social media, take some time to plan ahead for what you will share and how you will share it. Speak from the heart; be accurate, honest and persuasive. The following questions will help you to develop your story in order for it to have maximum impact.

  • How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it.
  • What is too private to share? Let the audience know your boundaries.
  • How comfortable is my family with me talking about my story (or theirs)?
  • What supporting material will make my story stronger? Can you use pictures, research data, and statistics to support your story? Create an experience in images that evokes an emotional response.
  • What is the main take-home message you wish to leave your audience with? Focus on two or three main points for clarity.
  • What do I want my listener to do when I am done? Do you want your listeners to take action after hearing your story? Outline clearly the next steps they can take to do so.

Taking the decision to share your story is a personal one. Emma Rooney, a rare disease patient advocate has this to say:

“I’ve been telling stories since I was a child but my health story always seemed like something to keep private. Despite living with a rare disease my entire life, it wasn’t until becoming a young adult that I decide to share my journey with Gaucher disease. Openness to sharing has led me to other patients who have similar health experiences, and also connected me with stories that are very different from my own. This diversity helps me to better understand my condition and to connect the dots with new information. Storytelling has provided a type of healing that drugs alone can’t offer. My health is an evolving story, and continuing to be a storyteller is part of my wellness strategy and my way to contribute to the global community of patient advocates.”
Each of us has a compelling story to tell; a story with the power to build connection, increase understanding, and move others to take action. Developing our skills as storytellers is a powerful tool in our patient advocacy toolkit. Your story is a precious resource; use it wisely and well.

[1] PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson.

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