Storytelling and Science, #2

webpanel_storytellingimage: http://firstpersonarts.org/storytelling/

Increasingly, I am frustrated and dismayed that one of our presidential candidates had to profess: “I BELIEVE IN SCIENCE.” Has it come to this? Does a democracy necessarily give such freedom as to devolve to the “freedom to be ignorant and believe whatever you read on the Internet”?

Over the years I’ve gradually improved the presentations I’ve given, by reading and hearing great speakers. Steve Jobs at Stanford, Barack Obama, Ken Robinson (on education), Jill Bolte Taylor (a neuroscientist’s personal stroke story). And I contrast them with the presentations I’ve heard in college, medical school, from physician colleagues and scientists. And the difference is … STORY (or lack thereof).

I believe this is also true to some degree among physicians. Even though all humans think in Narrative, we confuse it with our many meanings of “story.” Scientists demote “story” and “narrative” to second class citizens, in favor of dry statistics and ‘p-values.” WHY? I think it is to the detriment of our purpose: to FIGURE STUFF OUT, to TELL PEOPLE ABOUT IT, and to HAVE IT MAKE A DIFFERENCE IN OUR LIVES.

This is a long (and far from complete) journey for me, but some of the books and website I’ve read and would highly recommend, include:

Houston, We Have a Narrative (why science needs story) by Randy Olson

in which the author indicates that there is a way to boil down stories to: one WORD, one SENTENCE or one PARAGRAPH. He also references Joseph Campbell’s The Power of Myth and the Hero’s Journey, and many other time-tested narratives, and claims (very successfully) that story and science belong together, and all of us need both to survive into the future. I hope you get as much out of these as I am starting to (referring to myself as the flawed protagonist, who faces a daunting challenge, and must solve his personal flaws to overcome this challenge; read the book to understand).

So cool. Just like learning how human anatomy works in medical school: you never look at other humans the same way again.

Whoever Tells the Best Story Wins

The Power of Myth by Joseph Campbell

Stories Worth Telling (a 62 page PDF guide for nonprofits)

The Storytelling Culture and the Sacred Bundle  from the newsletter Free Range Thinking, written by Andy Goodman, dedicated to improving Public Interest Companies.

The Sacred Bundle, for example, describes how American Indian tribes would constantly relocate. At every new temporary settlement, the chief would carefully unwrap the cloth sack, gather the tribe around him, and take out objects from “the sacred bundle” one at a time. He would hold each one up: “this stone was from the river where our tribe first came together.” And he would tell that story. “This feather was from the head-dress of our bravest warrior. He died protecting …” and so on. This retelling at each new location made that settlement home, and the common knowledge ran through the tribe, and all members grew to know it by heart.

What an incredible, simple thing. I am striving to create this sacred bundle, for our large and growing organization. In our Digital age, is it sufficient to have a “virtual” sacred bundle? Do we need physical, tangible objects to remind us from whence we came? Can storytelling save science and healthcare?

 

Storytelling in science, good or bad idea?

webpanel_storytelling

Borrowed from First Person Arts dot org

I was once reprimanded by the daughter of a patient, who called me after our visit with her father. I had casually remarked “What a fascinating story!” in response to a long, involved recounting of his illness, his travels, his experiences with other healthcare providers, ending with his visit to my office. I had thought this was a kind reflection of his efforts to stay healthy.

Instead, his daughter informed me later, My Dad thinks that you don’t believe him when he tells you things.

It gave me great pause. The word “story,” to my patient, implied that his narrative was fabricated.

I never used that word in the exam-room again.

This is my personal interaction with storytelling in healthcare. The words “story” and “storytelling” are heavily laden with history and meaning, sometimes unintended. Many, perhaps most scientists I know and respect, stick to presenting the facts, devoid of story, for precisely this reason: you can’t argue with facts, and stories are the realm of fiction and politics and dreamers, with “no place in science.”

I’m coming around to the idea that this is not only untrue, it is harming science.

We, as scientists, physicians, informaticians, MUST accompany our science and facts with stories. Our world revolves around stories. My current favorite quote by Muriel Ruykeyser:

The universe is made up of stories, not atoms. 

I’ve been devouring books and online treatises on this topic. More on this in BLOG 2 of STORYTELLING IN SCIENCE next week.

 

At the heart of healthcare: caring

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A Letter to the Doctors and Nurses

In this incredible, short letter, a young man reminds us what outstanding healthcare is all about. Caring not only for our (sometimes critically ill) patients, but also their spouses, their families, sometimes even their cat! Don’t miss this.

This puts into perspective our efforts in Healthcare Information Technology. In my view, the world is changing quickly. Technology improves. Software improves. Regulations … well, don’t improve, they change, they increase. Someone said   Change is easy, until you change something I care about.  Yes.

So often, our EHR efforts are met with resistance. We are often the face of Change to our physicians and nurses. We should remember, this letter links us back to our common goal, caring for patients, easing their suffering. I recall hearing the saying, in healthcare:  To cure sometimes, to relieve often, to comfort always. 

Others have written about the 20 percent physician (caution: huge 100+ page pdf), and I have had my worries about IBM’s Watson or other machine learning devices coming to take my job.

In my ideal world, the perfect EHR works behind the scenes to improve quality, safety, but otherwise disappears, and allows human connection and caring. This is our aspiration. Thank you Peter DeMarco, and your wife, for reminding us of the best of ourselves.

Slicer Dicer, ukulele parody of Helter Skelter

 

So, I just got back from Wisconsin, hob-nobbing with over 15,000 people at Epic’s UGM 2016 (national user group meeting). We sent a half-dozen folks to present talks on such topics as our Physician Builder governance program where our physician informaticians are trained and given the keys to build sophisticated charting, ordering and reporting tools directly into Epic; our Smart-pump integration to deliver safer IV medications to patients; and this, my participation on the Slicer-Dicer discussion panel.

Slicer is an Epic tool for the average Epic physician user to “surf” the de-identified patient data in a simple self-explanatory way in order to see patterns in the data (in our case, applying to over 5 million unique patients). The tool can make it easier to look for quality improvement opportunities (what percent of my coronary artery disease patients are taking the recommended aspirin dose?), for teaching opportunities (does an increasing BMI correspond to an increasing rate of being diagnosed with diabetes?), for process improvement (which clinics have the highest patient-adoption of our online patient-portal for communication?), and even pre-research, hypothesis generating questions (which blood pressure medications are associated with the highest rate of patients with blood pressures below 140 systolic?). The tool shows bar graphs of de-identified data that can point out surprising trends and lead to more sophisticated projects downstream.

Of course, in case the audience of 250+ wasn’t adequately entertained with our expert panel’s recommendations (Stanford Childrens, Novant, and ourselves at UCHealth), I volunteered to play my uke to illustrate the finer points of our academic arguments…

Forgive the off-key singing and enjoy!

My sister (the smart one)

In the world of ideas, well-written posts speak loudly. I have struggled to put coherent words together, and to post regularly enough to establish a voice. Those of you who have read and commented and “liked”, thank you. Both of you.

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Michelle Lin MD

However, I have a sister. Michelle (@M_Lin) is an academic Emergency Department physician at UCSF-SF General Hospital, and runs an award-winning, million-follower medical website, called ALiEM (www.aliem.com). At least one colleague has quipped: “Michelle is your SISTER!? Wow, she must be the smart one in your family.”

So be it. Kudos to the smart one. Her most recent article celebrates the brand new partnership between ALiEM, representing the new digital frontier of healthcare, with a well-established brand in medical literature, the Western Journal of Emergency Medicine. Congratulations, sis!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5017832/pdf/wjem-17-511.pdf

NYtimes: releasing medical records

08up-records-superjumbo-v2I’m gratified that the public conversation on electronic (and also paper) medical records continues. Its a dry topic, but oh so important. Ms. Sanger-Katz writes about Casey Quinlan (and her QR code!), and the difficulty of assembling a longitudinal health record that becomes more important as we get older. The morass of privacy, mistrust, bureaucracy, swiss-cheese implementation of EHR (electronic health records) with few electronic connections, throw numerous barriers into this journey. Open Notes is just the opening salvo in trying to ease that journey.

Those who succeed in pulling together their medical records to coordinate their care are lucky indeed:

Dr. Tierney worked for years in Indiana to help the state develop a cutting-edge health information exchange, a place where most of the state’s hospitals shared patients’ medical data. After 44 years in the state, he queried the exchange for his records before leaving. He paid $100 for an inch-and-a-half-thick stack of papers.

“I went to my new doctor,” he said. “I put it on the table. And she said, fill out the form.”

www.nytimes.com/2016/09/08/upshot/release-your-medical-records-first-you-must-collect-them.html

Open Notes: a 16 year journey

Upcoming press release:

UCHealth is excited to be the first in the state of Colorado to offer Open Notes to all 1.5 million patients in our system (as of May 2016). Open notes are now available across the spectrum of care, including outpatient clinics and emergency department notes to hospital discharge summaries. We believe that information transparency is crucial; an informed and engaged patient is a healthier patient.

Or, in Haiku form:
Not sure what Doc said?
Why hide medical advice?
Open Notes are here.