Virtual ‘Sofia’ Introduces Health Research to More Kids

Released in 2017, the book 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 from UB’s Clinical and Translational Science Institute (CTSI), “Sofia” generated a positive response for its novel approach. Its authors knew they could take the concept even further.

“We realized that the future of this project is interactivity,” says Quattrin, whose 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,” says Quattrin, who is also director of CTSI’s Recruitment and Special Populations Core. “The idea was to create a version of ‘Sofia’ that would work particularly well on tablets.”

The answer is an interactive web version of the book. This new take on “Sofia Learns About Research” gives children the opportunity to color, play games and engage with Sofia’s journey on the device of their choosing. A printable version is available to download.

“Sofia” team members had been 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 annual CTSI “Tricks, Treats and Science Discoveries” Halloween event.

However, translating the print version of “Sofia” for web was not a simple process. As Quattrin explains, technical details like the ability to zoom and easily color onscreen required some creative solutions. Plus, since children absorb information in a variety of ways, the web version is designed 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 testing and ironing out technical issues, it is online and ready to be enjoyed.

“We wanted people to have access to it in other places, including more remote locations,” says Quattrin, who is a physician with UBMD Pediatrics. “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. In addition, 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.”

Co-authors are:

• Renee B. Cadzow, PhD, adjunct assistant professor of pediatrics at the Jacobs School of Medicine and Biomedical Sciences and associate professor and chair of the Health Administration and Public Health Department at D’Youville College
• Alexandra Marrone, a rising fourth-year student in the medical education program

The drawings are by Isabella Bannerman, a Buffalo native and award-winning cartoonist who is one of the contributors to the syndicated comic strip Six Chix. The graphic design was completed by Tia Canonico, a Rochester Institute of Technology graduate.​

Funding for the project was provided by the National Center for Advancing Translational Sciences’ Clinical and Translational Science Awards Program.