Understanding Medical Narratives
In the Fall of 2014, I helped craft and faciliate a workshop for the Medical Narratives program at Columbia University. 
 
The goal of the workshop was create a clearing—a metaphorical space—to allow a diversity of people from storytelling and medicine to come together to tackle challenges of communication and interaction. To do so, LearnDoShare crafted a series of activities intended to both progressively build content and to encourage participants to openly collaborate with one another. 
Participants came from two distinct backgrounds—storytelling and medicine—with many different types of experiences and expertise, respectively. While sign-up sheets can provide demographic information, we wanted to better understand each other’s more personal reasons for attending. And furthermore, encourage levels of trust and comfort with each other.
 
Participants introduced themselves to one another through the 5x Why activity. Each person asked the other why he or she was there, five times in a row. There were no follow-up questions to distract the asker from listening. And, after being asked the same question a few times, the participants opened up and gave more personal reasons for attending. Participants then swapped roles, wrote a summary of the five reasons, and then presented their partner’s reason for attending to the larger group.
 
Afterward we transcribed those summaries, and coded them for common expectations. Most participants were attending the workshop either to develop their own storytelling practice or to push the limits of the intersection of medicine and narrative. A few participants were specifically focused on creating or defining their own health stories, and a few were primarily interested in meeting new people and expanding their creative network.
 
Here is a sample of what some participants were looking for in the workshop:
 
“Ellie is a researcher and physician who came out of her desire to gain creative skills to help patients tell their stories, and to share those practices with others in the medical field, as they are currently not trained in these skills.”
 
“John is here to connect with people considering narrative in space of health and humanity, and engage in conversations about the potential of stories to catalyze a movement towards compassionate care at the end of life.“
 
“This engagement is a natural evolution of my experience/expertise extracting narrative from unexpected places through innovative technologies. Medicine is a frontier in which natural but uninitiated storytellers speak and listen, and supporting this process is a new creative pursuit that may allow me to apply my skills in novel ways.” 
The main activity of the workshop was the Wheel of Reason, a storytelling design method from Freedom Lab. The Wheels help participants articulate a complete narrative of the challenges they're facing. Workshop participants filled in sections of the Wheel to help them think through the full cycle of healthcare innovation—from cause of the primary problem to the resulting change from the solution.
 
For example: 
 
Cause
Medical professionals begin to speak in abstract terms
           
Threat
Disconnect with life experience           
 
Problem
Lack of understanding           
 
Crisis
Language gap between doctor and patient           
 
Source
We had a wild idea           
 
Opportunity
How two paths can sort of merge (translate, etc.)           
 
Solution
Structured back-and-forth, swapping time for context (patient) and forced (?) questions (doctor)           
 
Change
Shared framework that helps find a common language           
 
Another group created a setting for their story—the yearly medical visit. They also named participants, a patient and doctor, and cited a motive, which was that the “doctor wants to regulate health in well-enough person, whereas the patient wants assurance.”           
 
Every group had a chance to present the logic and creativity of the wheels, as well as receive feedback from the larger group—feedback that centered around refining the story and exploring other avenues of thinking about the problem at hand.
 
After much discussion, the final activity of the day was to take the structured output from the Wheels of Reason and create a narrative that told the story cohesively.
 
Here is one result of that exercise.
 
ANNE GETS A PHYSICAL
 
A play
by Catherine Rogers, Rita Charon, [PLEASE ADD NAMES of the two women and one man who were with us] at Digital Storytelling Lab
 
Scene 1: The Waiting Room
 
ANNE arrives at the crowded waiting room in the offices of DOCTOR X and associates. Doctor X is noted for her specialty in Narrative Medicine.
 
RECEPTIONIST
Hi, Anne. What’s wrong with you?
 
ANNE
I’m kinda’ tired.
 
ANNE takes a seat.
 
WAITING PATIENT #1
Hi, Anne. What’s wrong with you?
 
ANNE
Why do you think something’s wrong with me? Are there bags under my eyes?
 
WAITING PATIENT #2
Hi, Anne. What’s wrong with you?
 
ANNE
I’m just waiting for my EKG results. But no, it’s just routine. I don’t think there’s anything wrong with me.
 
WAITING PATIENT #3
Hi, Anne. What’s wrong with you?
 
ANNE
Will people stop asking me that!
 
WAITING PATIENT #4
Hi, Anne. What’s wrong with you?
 
ANNE
Well, maybe I need some financial planning.
 
A disembodied voice reverberates through the waiting room “ANNE, THE DOCTOR WILL SEE YOU NOW!!
SCENE 2: The Doctor’s office
 
ANNE
Hi, Doctor.
DOCTOR
Hi, Anne. What gives you pleasure? What are your moments of serenity? OK, your cholesterol is fine. EKG normal. You got your PPD, your flu shot. . . . Are you happy?
 
ANNE
Happy? Are you legally allowed to ask me that?
 
DOCTOR
Hm. Let’s think about that.
 
There is a loud knock at the door.
 
DEATH (outside the door)
Knock, knock!
 
DOCTOR
Who’s there?
 
DEATH (stepping inside the door)
Death.
 
DOCTOR
Death?
 
ANNE
Death?
 
DEATH
Death. Yeah, you know, Death. One of you guys has an appointment with me.
 
DOCTOR and ANNE
We do?
 
DEATH
Oh, yeah.
 
ANNE
Not me. My EKG is normal.
 
DOCTOR
Not me. I’m a doctor.
 
DEATH
Sorry, I must have the wrong room.
 
(DEATH leaves, but pokes his head back in).
 
I’ll be just down the hall.
 
ANNE
That was a close one.
 
DOCTOR
Don’t worry. I think he’s gone. For now, anyway.
 
ANNE
OK, yes, I am happy, Doctor. But, um, well, I haven’t told anyone yet, but I’m having difficulty sleeping because I’m spending so much time writing this play, and I really want to get it produced, and it’s . . . . oh, and you know what, my father’s lung cancer came back and. . . . he’s you know . . .I mean . . .eek . . . Death. . . .Death . . .he’s right down the hall!!!
 
DOCTOR
Well, what if we make a health plan together. Maybe we can talk some sense into him.
 
Takeaways
For this activity, we hand-coded the results into groups based on their primary topic and then polarity of the statements. Our goal was to understand what aspects of the workshop resonated with participants and where there were opportunities for improvement.
 
The group’s final thoughts on the day clustered into three groups—their main focuses were either on change-making, inspiration, or the workshop methods.
 
·       Change-making
A little more than a third of the group focused on tackling the challenges we articulated throughout the day, and how narrative methods might affect the healthcare industry.
 
“Some good ideas: Interactive and visual platforms by which patients can introduce themselves, relay their experience of their own bodies, and work through and prioritize their experiences of their physical, emotional, and spiritual selves. Physicians can access these "records" as rich text, integrated and personal.”
 
·       Inspiration
Participants with this focus positively reflected on how the elements of the workshop would carry over into their respective practices.
 
“The art of telling our story is healing and can have a domino effect on the patient, the caregiver, the community, and the disease. So I will, as a professional storyteller, continue to encourage this where ever needed.”
 
·       Methods
Around forty percent of participants focused explicitly on the methodology and activities of the workshop.
 
“…importance of thinking through narrative and healthcare approaches in mixed settings---needs profs and patients and community"
 
What did we learn?
Lastly, a few people expressed uncertainty or negative views on the process. Iteration is one of the most important parts of our process, and so we’re working on adjusting future workshops based on that feedback.
 
“Building a toolkit is complicated”
 
In this case, we’ll focus on scoping goals of future workshops more appropriately to the available time frame.
 
“Today here [I] my mind was harvested but I have no idea for what purpose or to what end.”
 
Transparency is always an important element in collaborative workshops. There’s a line between participant immersion and information that needs to be balanced by a facilitator’s understanding of how to create a collaborative space. Collaborators should feel both candid but also understand that the results of discussion might be used later, perhaps in a more reflective setting. 
After the workshop was over, we received a letter from Rita Charon, MD, PhD, Professor of Clinical Medicine and Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. The following are her thoughts on the activities of the day, as addressed to Lance Weiler and myself:
 
“Here is what I thought. The day was nothing like what I was expecting. I thought it would be a process geared toward coming up with tips on how to write about your sickness. Or I thought it would be time reserved for complaints about doctors and how to get back at them. Or I thought it would be a primer on how to find the right chat room to find people who share your disease.
 
It was nothing of the kind. 
 
Instead, it was a very structured organized avenue toward opening meaningful conversation among strangers about topics that are hard to talk about, multi-pronged, bound to raise hackles or at least disagreements, and guaranteed to hit persons in their soft spots. The finger goes to the place that hurts.
 
You used crowd-sourcing techniques, it seemed to me, to source the crowd we were in. You made us a crowd that was readable and, hence, recognizable to ourselves. The use of the colored stickies with the + and - comments, for example, that you and Sarah arrayed on the stage for that panoramic photo was dazzling. You were able, graphically, to tell us that we converged, that we had a lot to say to one another, that the voices were heard. The behind the scenes (or during lunch) work that Sarah masterminded was simply amazing. (emphasis added)
 
So over the course of a highly choreographed but apparently informal 8 hours, we progressed from being slightly edgy strangers to becoming a crowd or group or coven engaged in powerful work that could not have been done by any other assortment of people. You didn't come up with the questions to ask us as much as you encouraged us to come up with the questions. 't was a matter not necessarily of airing opinions or articulating positions but rather of the gradual self-recognition of a group. We became stickies.
 
Now: what did this teach me about digital story-telling in health care? Not very much in the technical domain, although some people tried hard to press that point. It taught me a lot about suffering undergone by the sick and those who try to take care of them. It moved me toward individual persons (Catherine's anorexic student, the young woman ill served by her psychiatric hospitalization). It helped me, personally, to learn that the kind of work my group does is of interest to many outside of it.
 
I think I learned more about your methods than about the content of the day. My jaw dropped at your, Lance's, ease and fluidity despite the highly intentional aspect of every gesture. Not that it was practiced or stagey. Instead, you rely on these methods that you've developed over time that really do form a clearing where strangers can gather in some safety, where they are encouraged to risk a little and then a little more in exposing deep and high-stakes memories or beliefs. Unlike the so-called trust games of the 1970s, this is not a gimmick. It is founded on common-sense and high-theory knowledge of how people think, how they congregate, what guarantees safety, and how language can tie. I think it rests on your awareness or conviction that you, as convener, are not the thinker for the group. You are not the authority or decision-maker or even particularly interested in having others agree with you. Instead, you are the midwife for the group to birth itself.
 
Since the workshop, my group and I are engaged in two new projects in digital storytelling in health care. Catherine and Daniel Eison and I are meeting with the founders of the Center for Digital Health Humanities whose headquarters is in a Renaissance castle outside Rome. They want to partner with us in some way. And then Thursday, Donna Bulseco and I meet with a publisher/marketer/on-line maven who wants to bring our work in Narrative Medicine way outside its current boundaries. Both these initiatives involve members of my group who attended your workshop and advance what we discovered there in new directions. So I guess that constitutes evidence that something happened as a result of the day.”
 
Understanding Medical Narratives
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Understanding Medical Narratives

The goal of the workshop was to create a clearing—a metaphorical space—to allow a diversity of storytellers and medical practitioners to come tog Read More
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