by Athos Bousvaros, MD, Boston Children's Hospital
Athos Bousvaros, MD, and Susan Kornetsky, MPH, both of Boston Children's Hospital, recently created a comic book, titled Sophie's Science Project, to help teach children about medical research. Below Dr. Athos shares their motivation for creating the comic book and what they hope it will accomplish.
For children and adolescents to participate in pediatric clinical research, parental permission is needed, but the children themselves are also expected to provide assent. Assent is defined by the US Department of Health and Human Services as "a child's affirmative agreement to participate in research." For many clinical studies, assent is documented by either having a child co-sign a five to fifteen page document filled with legalese (that in many cases even the parents barely understand), or sign a separate assent form. Usually, children participating in research projects agree with what their parents recommend, without having any clear knowledge of what research is or why research is being done. Investigators are actively working to address this gap in subject education by developing various initiatives, including efforts to simplify the consent/assent process and to determine what is really required in consent documents.
We took a "low tech" approach to educate children about research and the informed consent process, utilizing a medium that American writers and artists pioneered in the first half of the 20th century: comic books. Comics have been a mainstay of American popular culture since Superman first appeared in Action Comics #1 (June, 1938). In the 1940s, printed comics were selling millions of copies per issue, but the development of newer media (movies, television, and the internet) resulted in gradual declines in circulation. While one can't find comics at the local drugstore or newsstand any more, they continue to be read by millions of children, and are widely available in public libraries and comic book specialty stores. Comics are also omnipresent in our popular culture, in movies like Avengers, and television shows like Arrow or Big Bang Theory.
As a pediatric gastroenterologist and a lifelong comic fan, I have helped develop multiple educational comics for children over the past decade. These include Pete Learns All about Crohn's and Colitis for the Crohn's and Colitis Foundation of America, Amy Goes Gluten Free and JD Shapes Up for Boston Children's Hospital, and Journey to the Center of the Intestine for the North American Society for Pediatric Gastroenterology Hepatology and Nutrition. As an active clinical investigator, I realized the potential comics have in educating children about clinical research, and enlisted Susan Kornetsky, director of clinical research compliance at Boston Children's Hospital, to help with the project. The main points we wanted to get across were that research is how we learn (and hopefully improve child health), that research is voluntary, that there are many types of research, and that the informed consent document is evidence that the parents and child are willing participants.
Such concepts are pretty complicated, however. Fortunately, we collaborated with a superb writer and artist team, Hilarie and Joe Staton. Hilarie writes children's books, and Joe has been a professional comic illustrator for over 30 years. Among other works, Joe has illustrated Batman, Avengers, Hulk, Scooby Doo, and is the current artist on the Dick Tracy newspaper strip. For the pediatric research comic, Hilarie and Joe developed a story where Kevin, a young boy with asthma, is asked to participate in a study. Kevin's sister Sophie, a very intelligent middle schooler with an interest in science, decides to ask Kevin’s doctor why they want a blood sample from Kevin, and what medical research means. Through her inquisitiveness and detective work, she learns a great deal about research and the informed consent process.
We were lucky to have the enthusiastic support of many collaborators, including a patient advocate, an FDA ethicist, and institutional review board leaders at Children's Hospital of Philadelphia and Cincinnati Children's Hospital. The final product, Sophie's Science Project, is freely available both in print and electronic form. At our clinics, we leave copies out for families to take home, and we hand them out to children participating in research. We hope Sophie's Science Project will demystify research and increase understanding for our youngest patients. If anyone would like print copies, please email email@example.com.