‘Sofia’ goes virtual to introduce health research to new audience of children

“Sofia Learns About Research,” an activity and coloring book released in 2017, provides a unique, fun tool to help reduce the fear and uncertainty children have about participating in research. “Sofia” tells the story of a young girl with asthma who learns the value of taking part in health research and clinical trials. The book was designed to introduce a complex topic to young readers in a relatable, non-threatening way.

Created by a multidisciplinary team at UB’s Clinical and Translational Science Institute (CTSI), “Sofia” generated a very positive response for its novel approach. Its authors knew they could take the concept even further.

How, the investigators wondered, could “Sofia” knock down geographic boundaries and be available to every child, everywhere? How could children go even deeper into Sofia’s story? And how could these young readers personalize the experience and make it their own?

The answer is an interactive, web version of the book. This new take on “Sofia Learns About Research” gives kids the opportunity to color, play games and engage with Sofia’s journey on the device of their choosing. The print version also can be downloaded.

“We realized that the future of this project is interactivity,” says Teresa Quattrin, UB Distinguished Professor, senior associate dean for research integration in the Jacobs School of Medicine and Biomedical Sciences at UB and director of CTSI’s Special Populations core. The internationally recognized researcher is also a pediatrician, and her years of experience working with young people informed the creation of “Sofia.”

“Many kids are now learning directly from tablets and computers rather than paper books,” Quattrin says. “The idea was to create a version of ‘Sofia’ that would work particularly well on tablets.”

“Sofia” team members — including Quattrin and Renee Cadzow, associate professor and chair of the Department of Health Administration and Public Health at D’Youville College — were pleased with the success of the print version, as well as their outreach efforts. Last year, the book was presented at a family-friendly event at Canalside Buffalo and shared with children and their families at the CTSI “Tricks, Treats and Science Discoveries” Halloween event at the Jacobs School.

However, translating the print version of “Sofia” for web use would not be a simple process. As Quattrin explains, technical details like the ability to zoom and easily color onscreen necessitated some creative solutions. Plus, since kids absorb information in a variety of ways, the web version needed to account for multiple styles of learning.

“We wanted children to be able to use an instrument that they are very familiar with, but also allow them to be able to play around with the colors or play the games in different circumstances,” she says. “Some kids just like to scribble and color at first, and others start by learning about the content.”

Now, after a process of testing and ironing out any technical issues, “Sofia Learns About Research” is online and ready to be enjoyed.

“We wanted people to have access to it in other places, including more remote locations,” Quattrin says. “The print version of the book has a limitation because we always have to send a copy. Yes, you can download the PDF. But this means that people have to have the means to print it as well.”

Quattrin and her fellow investigators are exploring multiple ways of measuring success. A web version makes eliciting feedback much easier, site analytics will offer helpful details, and pre- and post-visit tests are also possible.

“We do not know for sure yet whether the interactive version will be more conducive to demystifying the research process, or make children more comfortable with the idea of participating compared to the paper version,” she says. “But with children so used to absorbing new things through electronics [this may be the case].”

Quattrin’s work as a pediatrician and researcher, and now with “Sofia Learns About Research,” is helping children in Buffalo — and beyond — realize how their participation in research can make a difference.