Can Comics Enhance the Practice of Medicine? A study using "My Degeneration, a Journey Through Parkinson's suggests "Yes"

Copies of "My Degeneration" await readers at Fireside Books in Palmer in 2015

This past summer, I attended a conference on "Graphic Medicine" an area of the medical humanities that considers the intersection of comics and medicine. It's a discipline that rests on the assumption that through creating and reading comics, patients, doctors, nurses and others involved with the health care system can come to a better understanding of what they are doing, and the effects it has on outcomes. This should result in better care. But can a better understanding of delivering care for complex medical issues result from reading... um, ... comics?

That's what Dr Michael Green and a team of researchers from Penn State University aimed to find out. And, in a high-stakes move for me, they chose my book-length-comic memoir "My Degeneration, a Journey Through Parkinson's" as the test subject of their- study. Pressure? What pressure? Nothing at stake here. Just the legitimacy of the work being done by the excited and enthusiastic attendees of the conference. Many of whom were assembled in the Dartmouth College classroom where the team was unveiling their results. I could imagine the wrath that would be turned on me by the classroom full of Graphic Medicine practitioners, fans and publishers (including my editor) if the book failed to deliver on the mission.

Because I'm a comics creator, that imagining took on a downright operatic exaggeration of tragedy and pathos that I did not look forward to experiencing in real life, featuring me in the role of comics martyr. So I made a mental note about location of the nearest exits, and braced myself.


The presentation began with a statement of the study question "Does reading the book help health care providers better understand the lived experience of patients with Parkinson's Disease? Subjects were recruited, given a copy of the book, filled out a questionnaire, reconvened for a discussion four weeks later and filled out the questionnaires again, prior to the discussion.

The results for the small group of medical professionals that took part were encouraging. Their scores for questions like "how confident are you that you are able to...

• understand the stigma that people with Parkinson's Disease experience?
•understand what it's like for a patient to live with Parkinson's Disease?
•understand the impact of PD on family members
•help patients cope with PD?"

 all went up between 10 and 17 points!

In addition, their experience with "My Degeneration" left them with enhanced esteem for comics. Participants views shifted positively when choosing between attributes such as "valuable" and "worthless", "good" and "bad" and, my favorite, "smart" and "stupid"to describe comics. No words minced there!

Major themes that emerged from quantitative analysis were

• The book provides a meaningful way for healthcare professionals to learn about the lived experience of patients with PD 
•The comics form successfully engages healthcare professionals in ways that differ from other mediums
•The benefits of the book extend past the healthcare team

The researchers found that "My Degeneration" had a "profound effect" on clinicians who treat PD, and helped them have greater confidence in their treatment of patients. (although it did not seem to enhance their clinical knowledge about Parkinson's. Hmm...)

This is an encouraging indicator that those of us practicing in this medium are on the right track. (other indications this is so? Testimonials by Amazon readers to the value of the book. Not as rigorous as the research by the Penn State team, but pretty darn heart-warming to this author.) And speaking of rigor...  

Researchers cited the following limitations of their study:

•Single study site
•Small sample size
•No comparison with control group
•Self-selection of of subjects could lead to sample bias

So this is not an air-tight study, but more a sign this is a promising direction for further research. It suggests that comics, or one comic, anyway, can have a fruitful and unique role in promoting relations between medical professionals and patients. In my experience, this can only be a good
thing.

 I'm grateful to the researchers for taking the comics seriously, and for selecting my book as a test-case for study. I look forward to hearing about the further research they have planned to be focused on how patients respond to the book.

Oct 21st, a Halting Talk on "My Degeneration" at Providence Hospital

I will be giving a halting, slurred speech about my book-length comic "My Degeneration" this Saturday, October 21st at the Adaptive Abilities Fair put on by the local MS organization. My talk begins at 10:00 am and goes for about an hour, including the Q&A at the end. I will have a number of books available for you to pick up, thumb through, put down, then pick up again and finally buy. And yes I will be happy to deface their crisp, clean pages with my damn near illegible signature. The venue is the Providence Health Park, 3851 Piper St., Tower U Rms 2281 & 2285

Dispatch From the Comics and Medicine Conference in Seattle

Hello all, just got back from the Comics and Medicine conference in Seattle. It was a good opportunity to meet people who have been instrumental in the success "My Degeneration" has met with, especially MK Cizerwiec, who has been a tireless, enthusiastic, and influential friend of the book, Kendra Boileau, who was the editor I worked with most, Susan Squier, who was the series editor, and Ian Williams, who gave early encouragement. Thanks again to all four.

The conference was a great chance to meet other figures from the small-but-growing world of Graphic Medicine, and see the work of other practitioners in the field. Among the many people I met were Brian Fies, author of "Mom's Cancer", Michael Green, co-author of "The Graphic Medicine Manifesto" and Dana Walrath, who wrote "Aliceheimers".

My favorite part of the conference was talking to the many professors who are actually teaching "My Degeneration". I lost count after six (following the principle of 1, 2, 3, 4, 5, 6, many) but it was fun to hear what students, both undergraduates and those from medical school, made of the work.

The most surprising thing to come out of the trip was to find out that Dr. Michael Green is doing a study on the effect of Graphic Medicine on doctors, caregivers and patients, and he chose "My Degeneration" as the text to be tested! I asked what criteria drove the choice, and among the factors were, I got the medicine and science right, that the story itself wasn't too frightening for patients, that I gave specific tips for coping and that they had many patients available as there is a PD center at his hospital.

If I understand correctly, the methodology was first to interview the three different groups about their attitudes toward Parkinson's Disease and those that have it. Then the participants read the book and redo the same interview as before their exposure to the book. They are now analyzing the responses and have agreed to loop me in on the results, which I will be glad to share here when they are available. (Provided, of course the result reflects well on the book. If not I will bury them so deep they will molder away in the dark, lost to the ages, until they become unrecognizable to man or beast. But I am confidant such measures will be unnecessary.) So stay tuned for further exciting developments!

And finally, a big fat thank-you to my friends, relatives and Whitman buddies who came out to support the sale and book signing, with extra laurels for Sue Skillman and Phil Fenner for putting me up, and putting up with me!

My Degeneration" Featured in Thoughtful Alaska News Dispatch Article by Mike Dunham (Cross post from Frozen Grin)

A perceptive and thoughtful article from Mike Dunham appeared in the Alaska News Dispatch on "My Degeneration" putting it into the larger context of the Graphic Medicine genre. The article yielded the following "... the book presents much of the trauma in the garb of absurd humor. Dunlap-Shohl devotes several panels to recounting how nervous or insensitive doctors broke bad news to patients. Some of their manners were so crude that they seem drawn from the sad, wicked comedy of Vonnegut or Balzac." To which I can only say "Thank you". 

(Worries to self about raising expectations sky-high, then remembers, Mike likely the only living person in Western Hemisphere to have read any Balzac.)

"The Bad Doctor," a Graphic Medicine Prescription for Patients and Doctors

What is graphic medicine? It's the broad term for those works (this blog, for instance) that take on issues associated with illness, treatment, wellness, the health care system, and their place in community and the wider world, through the visual language of comics. The idea is that comics can be a powerful medium to open beneficial lines of communication between patients and medical service providers. They may also help clarify our thinking about tough subjects such as end-of-life care, or fairness in the distribution of care and resources. Comics can be potent in their ability to distill and pass on complex ideas and intense emotions. If you don't believe me, you haven't read "Maus," by Art Spiegelman.

Penn State Press is undertaking an effort to publish a series of books both about, and of the Graphic Medicine genre, on the theory that it "articulates a complex and powerful analysis of illness, medicine,  and disability and a rethinking of the of the boundaries of "health'" (Full disclosure, the Penn State publications will include my book "My Degeneration" about dealing with young-onset Parkinson's Disease.)

The first two books in the Penn State series have just been published. They are "Graphic Medicine Manifesto" written by editors of the series, and "The Bad Doctor" a graphic novel about a middle aged doctor who practices in the British countryside. It was written by Dr. Ian Williams, one of the editors of the series. I've read "The Bad Doctor," and can answer the question of whether it makes the case for the merits of this genre with a clear "yes."

One advantage of comics is the form's ability to compress information. In just over 200 pages "The Bad Doctor" lets us look over the shoulder of its central character, Dr Iwan James, as he encounters an assortment of patients ranging far and wide on the spectrum of "normal."  We also get close-ups of number of James' colleagues, who emerge as people remarkably like the rest of us. They struggle with romantic problems. They have personality flaws and philosophical conflicts about how to run their practice. They have moments of strength and weakness, idealism and avarice.

Nobody embodies these conflicts more than Dr. James. While on duty with patients, He exhibits a calm and caring competence. Underneath there is tension. He is attracted to one of his partners, and at odds with another one, who is opportunistic and lazy. Not that Dr. James is above researching bicycles on the internet when he should be attending to clinic business. Furthermore, we learn from a series of dreamily-rendered flashbacks, he still is still troubled by the intrusions of a case of obsessive-compulsive complex. We see Dr. James'  baseless fear that he may harm one of his patients subtly reflected in the fear of an obsessive-compulsive man he treats who is tormented by thoughts he will damage his beloved nephews.

Dr. James is no Dr. Kildare, able to pull miracles from his pocket. James' pocket is more likely to produce lint.

So what is the lesson here?

When I first began to attend support group meetings for people with Parkinson's Disease, I was surprised at the amount of time the group spent airing anger at the doctors who were supposed to be our allies in our efforts to cope with the disease. Often these feelings were based on callous remarks or moments of utter cluelessness that these Doctors inflicted on their patients. These moments of casual destructiveness were made all the worse by our expectations of doctors, that they are demigods, learned, deft healers, immaculately trained and disciplined, yet wise and caring.

Well, bang goes that illusion. And really, good riddance. Thanks to "The Bad Doctor" we may see doctors as limited like the rest of us. Once we no longer imagine them as high priests of healing endowed with holy infallibility, two things happen. First we can see our doctors as human, struggling to do the best they can with the tools at hand. This will enable a more realistic expectation of what is possible, and a gentler sense of disappointment when these (mostly) good people fall short of the perfection we sometimes count on.

Second, with the recognition of doctor's limits, it becomes all the more important that the patient accept more responsibility for managing their care. Patients need to learn what they can about their affliction, and to be alert to factors or phenomena that their doctor may have overlooked or not been aware of. The new paradigm is for partnership between doctor and patient to treat disease.

"The Bad Doctor" acts like a vaccine against the notion that we can delegate responsibility for our health to anyone else. We must find the best-trained, most capable medical care we can, and then to work with them to achieve the most satisfactory result. We must be realistic about what doctors can do. That's not a bad thing. It's a recognition of reality.

There certainly are miraculous things accomplished today by the people who wield the tools of modern medicine. None is more miraculous than the important fact at the core of "The Bad Doctor": these mighty feats are performed by people not so different from you or me.