Published October 6, 2017
An important goal of UB’s Clinical and Translational Science Institute (CTSI) is to improve the representativeness of research studies, including participants from special populations such as children, the elderly, underrepresented racial and ethnic groups, and people with disabilities.
A multidisciplinary CTSI team of investigators came together this year to address one obstacle to recruiting diverse populations: negative perceptions of clinical research in the community. Their chosen approach? A children’s coloring and activity book that addresses common objections while highlighting the advantages of study participation.
“Through conversations with community members, school nurses and other key stakeholders, we learned that many people are skeptical of researchers and often distrustful of their intentions,” said Renee Cadzow, PhD, who is assistant professor of HealthServices Administration, the director of the Center for Research on Physical Activity, Sport and Health at D’Youville College, and a community liaison/outreach specialist with CTSI’s Special Populations core. “They perceive research as minimally helpful to them and are doubtful that they will see the results of it and how they are applied.”
However, she said, they also acknowledge the importance of having broad representation in research studies, and could see the potential for getting access to needed health care resources as a result of study participation.
The book was co-written by Cadzow, an anthropologist and researcher, Alexandra Marrone, at the time a research assistant and now a UB medical student, and Teresa Quattrin, MD, a pediatric endocrinologist and researcher. The drawings are by Isabella Bannerman, an award-winning American cartoonist andgraduate of Buffalo Seminary currently based out of New York City, and the graphic design was completed by Tia Canonico, a recent graduate of the Rochester Institute of Technology with a BFA in illustration.
Quattrin, UB Distinguished Professor and A. Conger Chair of Pediatrics in the Jacobs School of Medicine and Biomedical Sciences, is director of CTSI’s Special Populations core and serves on the CTSI steering committee.
“Sofia Learns About Research” presents research in a non-threatening way by telling the story of a child with asthma as she walks through the process of recruitment and participation in a clinical trial aimed at improving asthma treatment.
“In addition to the research processes that she participates in, there is also information about other types of research involving surveys, focus groups and body measurements,” Cadzow said. “Characters in the book represent numerous racial and ethnic backgrounds, and the line drawings encourage the use of the book as a coloring book.”
Pages of text are broken up by activity sheets, including a word search, maze, crossword puzzle and dot-to-dot picture. Key terms throughout the book are in bold lettering to indicate they can be found in the book’s glossary. Definitions are written in lay terms, with sensitivity to lower levels of reading, making it accessible to both children and adults, Cadzow said.
She said the children’s activity and storybook addresses a need for fun and engaging educational materials that effectively reach children while also answering questions for parents. The first wide dissemination of the book will be at the “Tricks, Treats and Discoveries: Family Fun and Learning Fair” on October 28, co-sponsored by the CTSI Community Engagement core and the Patient Voices Network.
“There is a real need to be able to educate the public on
the importance and benefit of participating in clinical
studies,” says Quattrin. “We hope to adapt this idea to
transmit an inclusive and culturally sensitive message not only to
children, but to adults and elderly, too”.