Tell any child that you need her consent to perform an endoscopic biopsy and want her on board with a “future use provision” and see what sort of look you get. Try to convey the same idea to a child and her parents in a West African nation with no written language and you’re out of luck.
Susan Abdel-Rahman has played out this scenario many times in her role as a doctor and researcher for Children’s Mercy Hospital.
Regardless of where she is in the world, the government requires parental consent for pediatric research. She’s also required to distribute paperwork to parents about every procedure.
But consent and paperwork are meaningless if no one understands the concepts she’s trying to impart. So, Abdel-Rahman, who is also a professor at the University of Missouri-Kansas City, decided to try something unconventional in her world of 20-page, text-heavy parental consent and child assent forms: pictures.
Her initial idea, in 2014, was simple: work with the Kansas City Art Institute to create graphics that explain medical procedures; no language needed.
Now in the fourth year of their partnership, and at the end of a National Endowment for the Arts grant with hundreds of graphics in a database, Rahman and her counterpart at the Art Institute know these graphics are anything but simple.
“You’d think the students would take on very straightforward concepts like drawing blood or collecting urine, but they don’t,” Rahman says.
“They really rise to the challenge of tackling issues such as confidentiality and voluntariness. Things like placebo-controlled studies and blinded studies. It’s fascinating to see the approach they take.”
When the approach involves a lot of embellishment, such as colors or some sort of narrative, they’ve learned that the underlying concept is typically lost.
David Terrill, assistant professor of illustration, has worked with several classes to produce the graphic explanations.
“Even drawing blood, one student kept it black and white and used red for the blood, thinking that would stand out and make it easy,” he says. “Well, it was like film noir, a scary movie.”
Terrill is certain that it came across as scary because every image is loaded into an Amazon crowdsourcing platform called MTURK, where it’s reviewed by people all over the world.
“You can’t bring in a lot of aesthetics to it. It has to be really boiled down, which is what I love about it — you really have to think about every mark you make. If somebody stylizes a hair-do, it gets critiqued,” Terrill says.
The course is an elective open to upperclassmen, and is taught as a simulated small design agency through the Art Institute’s Sponsored Studios Program. The students juggle work from real clients such as Children’s Mercy, the Kansas City Zoo and others.
During recent morning class at the end of the semester, Rory Frazier, a senior, showed a drawing about endoscopic biopsies she’d been working on. Her work was projected onto a large screen at the front of the class.
The image included tweezers, which an early critic on the crowdsourcing site had interpreted as a parasitic worm. After an edit, Rahman asked the class whether the tweezers looked organic or mechanical. The class agreed that the tweezers now came across as mechanical.
Frazier explained that she’d made the ends of the tweezers less pointy in an effort to make the depiction of the procedure both less frightening and less like a worm with sharp teeth.
Ultimately, Rahman says, with enough funding they’d like to create an electronic repository of graphics such as Frazier’s that any researcher can access. They’d add to it by allowing artists, with curation, to deposit new illustrations.
Now that a conversation between the hospital and the Art Institute has begun, more departments at both institutions would like to be involved, says Randy Williams, senior director of corporate programs at the Art Institute. The hospital has contacted the sculpture department about creating the dimensional models of hearts and bones, for instance.
“The idea is really to marry medicine and research with the visual arts,” Rahman says, “and to keep that partnership sustained in the long run.”
Follow KCUR contributor Anne Kniggendorf on Twitter, @annekniggendorf.
