Innovating sickle cell disease education models

At St. Louis Children’s Hospital in Missouri, a 12-year-old boy waiting in an exam room held a tablet as he scrolled through a trivia game about sickle cell disease (SCD) – an inherited blood disorder that had brought him to the hospital for a regular visit.

As he played the game, he won a badge each time he answered a question right. But happily, there were no wrong answers. That’s because the game’s goal is to explain – in simple terms – what many don’t know: that SCD affects more than 100,000 people in the U.S. and millions of others worldwide. That it is more common among Black children and adults. That it makes red blood cells form sickle, or half-moon, shapes. That because those sickled cells have trouble carrying oxygen to cells throughout the body, organs such as the heart, liver, kidneys, and brain can get damaged.

Developed by medical students and computer scientists, the Game to Raise Awareness for Patient/Provider/Public Education of SCD (GRAPES) also explains common SCD symptoms, like anemia and pain, as well as treatments. The game assures those who play it that people born with SCD can live long, healthy lives. Importantly, it provides a way for health care providers, along with family members and friends, to talk about SCD together with patients.

And that’s really the point, said Melanie Fields, M.D., a physician who specializes in treating children with blood conditions and cancer at St. Louis Children’s Hospital, and one of the mentors for the students who created the game. “It’s not that the patients and medical staff are clicking quickly or efficiently, but that they are talking about the disease,” she said.

The trivia-focused game is getting noticed. It won first place in the National Heart, Lung, and Blood Institute (NHLBI)’s 2021 Hope for SCD Challenge and is now part of a pilot study at the hospital to see how well it can educate patients and others. If it proves successful, the team hopes to test it in a larger study.

The potential benefits for GRAPES are vast, said Fields, who is also an assistant professor of pediatrics, hematology, and oncology at Washington University School of Medicine in St. Louis. For example, Fields said, as patients learn more about SCD, they may feel more empowered to advocate for themselves in different health care settings, schools, or work environments. Plus, a patient’s clinical outcomes or experience could improve as their knowledge about the disease increases. Fields noted that documented bias among doctors and nurses exists, such as a clinician not realizing how much pain a patient is in. The game explains lab results don’t always reflect pain, which can last for 3-4 days or more.

Amy Ouyang, the GRAPES team captain, works with Fields at Washington University to study the MRIs of patients with SCD. As the pandemic forced many projects and studies online, Ouyang often thought about those patients. As she finished her undergraduate degree in biology and global health and started applying to medical school, she found out about the Hope for SCD Challenge. A lead investigator in her lab shared the news in December. Ouyang quickly reached out to Fields and Veda Gadiraju, a friend and first-year medical student at the University of Washington School of Medicine, to create a team.

The contest – open to all college students – called for innovative solutions, such as digital tools and devices, that could share evidence-based information to help people with SCD live healthier and better lives. “Team science” was encouraged.

To help, Gadiraju’s sister, Manasa Gadiraju, a second-year medical student at the University of Missouri-Kansas City School of Medicine; Vinitha Gadiraju, Manasa and Veda’s cousin, a doctoral student studying accessible technology at the University of Colorado, Boulder; and Gloria Liu, who studies computer science at Rutgers University in New Brunswick, joined the GRAPES team.

They developed GRAPES so that people can play alone or huddle with others to talk about SCD. And Ouyang knew there was a lot to talk about.

“We learn, as early as in our introductory biology classes, that SCD is a genetic disease and it’s affected by a gene mutation,” Ouyang said. But how SCD impacts patients isn’t always part of the discussion, she added. “But it’s really important.”

Sherif M. Badawy, M.D., a pediatric hematologist and oncologist who specializes in sickle cell disease and thalassemia at the Ann & Robert H. Lurie Children's Hospital in Chicago and a professor of pediatrics at Northwestern University, served as the other mentor for the students. He hopes that by making learning fun and engaging, the SCD concepts will stick with users. “GRAPES is more of an approach,” Badawy explained. “We hope that this will have more than an impact beyond a computation, an award, and the game.”

As mentors, Badawy and Fields showed the team how to write a grant, create targeted education materials for patients and providers, and design a study. In turn, they also shared the type of work they do as physician-scientists and professors. And it had an impact.

Manasa Gadiraju said she is still deciding on a medical specialty, but she can envision working with patients, conducting research, and educating students. Veda Gadiraju is interested in a health care career and in working with populations, like SCD patients, who need extra support. “It gave me this clarity about using a health care career to primarily serve others and address health care inequities,” she said.

For Ouyang, even if the medical school she attends doesn’t have an M.D./M.P.H. track, she wants the program to have a community-oriented curriculum and provide health-equity training. Liu is entering her junior year and will continue to explore the intersection of technology and medicine. She explained Figma, the gaming platform they used, wasn’t designed with medicine in mind but provided a great prototype to develop the game and spread SCD awareness.

Many teams that entered the contest had similar experiences, said Joyonna Gamble-George, Ph.D., a health scientist at NHLBI and an American Association for the Advancement of Science (AAAS) science and technology policy fellow, who helped guide the contest. When NHLBI last held the challenge, five years ago, students from the same school often formed teams. This year, five times as many teams submitted entries, and students from different schools, backgrounds, and experiences came together.

“Encouraging multidisciplinary team science is what we wanted to do with this challenge,” Gamble-George said. It makes sense, she added, because SCD is a complex condition that requires a multidisciplinary approach for patients to receive the best possible care. “These diverse student teams contributed to building synergy between the arts and science, technology, engineering, and medicine and are pushing the boundaries of how people engage in complex problem solving.”

Other award-winning tools include a children’s book about SCD, which won second place, and apps that provide SCD education and care, which won third place and an honorable mention.

In the digital book “My Super Cells and Me!” teen readers look at SCD through the eyes of superheroes. Physicians, artists, such as Miles Davis and Prodigy, and athletes like football player Tiki Barber, provide real-life examples. Students at the Cleveland Art Institute created the book with help from medical faculty at Case Western Reserve University.

The mobile app SERGE – Sickle Cell Disease Education Resource & Gaming Experience enables K-12 users to learn about SCD and hear from clinicians about how to manage the condition. Students from New York University, Florida Agricultural and Mechanical University, and Duquesne University with backgrounds in computer design, biology, medicine, and public health created the game with support from a medical librarian at New York University.

“SC & Me” is an app that helps children learn how to talk about SCD. First, they can assess if they are ready to share their diagnosis with others, such as teachers, family, and friends. Having these conversations, which they can practice on the app, helps reduce stress and raise awareness about SCD. Then, they get to hear from people with SCD about how they have navigated similar situations. Medical and education students at the University of Pittsburgh, and an illustrator from Syracuse University, designed the app with insight from faculty at the University of Pittsburgh who specialize in psychology, social work, and translational science.

“It really adds a personal touch,” Gamble-George said about the app and other approaches students used to share information about SCD with the public. She hopes these “team science” models will expand in the future for students and researchers.

“There are a lot of opportunities to collaborate and come up with digital health education tools and technologies that are practical but also innovative and creative,” Gamble-George said. “These are the types of interventions that can contribute to spurring research and scientific discovery in new generations of researchers and those who are solving huge public health issues, like SCD.”

Another upside of these types of competitions, Gamble-George explained, is students start to realize they could one day become a scientist or researcher. Or have their own lab. “They can go from working at the bench to actually creating tools that they can patent, and one day put out and market to the public,” she says. “That can really make a difference.”

To learn about the NHLBI Hope for SCD Challenge, visit https://www.nhlbi.nih.gov/grants-and-training/sickle-cell-challenge.