Demystifying Cancer Through Design

By Andrew Connor

Every year, more than 17 million people worldwide receive a cancer diagnosis, and many of them will undergo external beam radiotherapy, the most common radiation treatment for cancer. Yet despite its frequency of use, the procedure can be intimidating and unfamiliar to many patients, no doubt compounded by the uncertainty that a cancer diagnosis can bring.

That is why Dr. Dan Golden, a radiation oncologist and associate professor in the Department of Radiation and Cellular Oncology at the University of Chicago’s Pritzker School of Medicine, had the vision of a portfolio of discussion guides that could help cancer patients through it. Working with Illinois Institute of Technology Institute of Design Clinical Professor Tomoko Ichikawa and her students, and with support from UChicago’s Bucksbaum Institute for Clinical Excellence, Golden brought his vision to fruition with a suite of discussion guides.

“When the patient visits the radiation oncologist for a consultation, they are in a very vulnerable emotional state. Much of their normal life and the control they would typically have is diminished,” says Ichikawa. “We wanted to create something that was tangible, that empowered them with information so that they had some sense of what was about to come. We wanted to support awareness of the process, understanding of their experience, and engagement should they want to be active in their treatment pathway.”

Called Communicating External Beam Radiotherapy Experience (CEBRE) discussion guides, the materials use graphic narratives and easy-to-digest information to facilitate conversations between patients (or their caregivers) and their medical care providers. The discussion guides focus on the process of radiation treatment, which involves exposing the body to a concentrated beam of radiation to shrink a tumor. Licensed with Creative Commons, anybody can download the materials and print them on a typical office printer.

“It helps patients to have a more concrete idea in their heads of what we’re talking about,” says Golden. “I can show these graphic narrative images that are designed intentionally to have the right amount of detail. This helps the patient to have just the right amount of granularity to understand what’s going on, without being intimidated by it.”

When the CEBRE project was initiated in 2017, the result was a general guide to external radiation therapy. But after receiving follow-up feedback from doctors and patients, it became clear that more specific materials would further provoke more fruitful conversations between patients and doctors. And so Golden and Ichikawa received two years of grant funding from the Radiation Oncology Institute to create a total of six new guides that cover the nuances of external radiation beam therapy on some of the body’s most common cancer sites.

Working with a team of ID students over the last two years, the team created three new guides in summer 2020—for lung, breast, and prostate cancers—and will be completing three more guides for brain, gastrointestinal, and head and neck cancers in summer 2022. Separately, three additional guides for a different radiation treatment called brachytherapy—a type of internal radiation therapy— were developed in 2019 for gynecological cancers, totalling 10 discussion guides.

As part of their design process, Ichikawa and her students interviewed patients and caregivers as well as medical staff—doctors, nurses, radiation therapists, and social workers, to name a few—to better understand the intricacies of the radiation treatment process and what information should be included to help ease anxiety and inform patients.

“Physicists and dosimetrists are the folks who devise individual treatments in terms of how big the ray should be or how often, how frequently, and how long [patients] are exposed. They’re the ones that really formulate the patient’s therapy, but they don’t ever see the patients,” says Ichikawa. “That can take a long time, a week or two even, and patients often wonder why they can’t start treatment right away. We suggested preparation activities the patients could do in the meantime so they feel more empowered, rather than being passive.”

Since the project’s creation, seven of the discussion guides have also been translated into Spanish in collaboration with Dr. Pilar Ortega, clinical assistant professor at the University of Illinois at Chicago’s Hispanic Center of Excellence in Medicine. Ichikawa says that the three CEBRE guides in progress are slated to be translated to Spanish, and that there will likely be more languages included in the future, further expanding the reach of the project.

“I don’t want these guides to be something that only I use because that’s not worth the hundreds of hours of effort Tomoko and the students put in,” says Golden. “But if people all over the country and even the world could use them? That would be incredible.” ●