A HEALTH AND COMMUNICATION TOOLKIT FOR THE US DEPARTMENT OF HEALTH AND HUMAN SERVICES
Colorectal cancer is the second leading cause of cancer death in the United States. It affects both men and women equally. Screening is the best way to detect this type of cancer early, when treatment is most effective, yet only half of people aged 50 and over who should get screened for colon cancer do. Colonoscopy is a screening method that has a number of patient barriers, including fear and inconvenience, and many people believe this is the only way to screen for colon cancer. However, this is not the case. Comparative Effectiveness Research—a methodology that helps patients and doctors compare tradeoffs of different medical options in terms of the benefits, harms, and costs instead of describing choices as “right” or “wrong”—shows there are actually three effective screening plans: colonoscopy, home stool test, and flexible sigmoidoscopy. Recent studies have also shown that giving people a choice of colon-cancer screening methods can lead to higher screening rates, which could save more lives.
To this end, the US Department of Health and Human Services (HHS) awarded a contract to IDEO to take a human-centered, design-based
GUTCHECK CASE STUDY
approach to helping patients and healthcare providers have better, richer, more informed conversations about which colon-cancer screening options are right for them. The result of the two-year long collaboration is Gutcheck, a modular communication toolkit—website, patient video testimonials, conversation tip cards, posters, brochures, and t-shirts—that supports the patient decision-making journey from awareness of different screening options to taking the first step in that chosen procedure. Gutcheck's digital component has been integrated into the National Cancer Institute’s website: https://gutcheck.cancer.gov/.
Translating complex research into simple, bite-sized bits of information using a friendly design language, Gutcheck combines “hard” medical facts with “soft” personal patient stories and positively positions screening as another wellness activity like yoga or walking that helps people live long, healthy lives. The communication toolkit was given to eight US primary care providers in a variety of practices to use during a six-month, highly iterative, “launch to learn” pilot run by the Institute for Healthcare Improvement and supported by IDEO designers in 2011. The practices differed widely in terms of geography, practice structure, and office workflow processes, as well as the ethnicity, socioeconomic status, and digital fluency of their patients.
Because the Gutcheck system had to engage both patients and doctors, the IDEO team based the final design on insights gleaned from extensive, in-home interviews with patients facing a range of chronic to acute conditions; “fly on the wall” observations of patient-doctor conversations; discussions with different types of doctors from primary care to oncology; and meetings with experts in decision-making, CER, and medical research translation. The team discovered that in an era of unprecedented access to health information—think WebMD, blogs, popular media, etc.—many patients feel overwhelmed when making a medical decision. Doctors, on the other hand, struggle to keep up with all the latest research, translate it, and explain it to patients within the constraints of short, 10-15-minute appointments. The team observed that while doctors will always be the medical experts, patients are the experts when it comes to lifestyle and how any eventual treatment will fit into that lifestyle.
Designers heard from those involved in the pilot that the Gutcheck system made information about screening options more understandable and accessible to patients, and helped doctors have different conversations with their patients. Patients liked hearing real screening stories from real people and appreciated a direct approach in dealing with the “ick factor” of stool samples or other taboo subjects. Doctors commented that Gutcheck tools were “easy to use,” that conversations with patients were now “more informed and accurate,” and that they were able to “present choices in ways that were more understandable and believable.” “Before Gutcheck, I just told patients over 50 to get screened,” says Tami Hogie, a practitioner at the Urban Indian Health Service. “I didn’t talk about the personal side, the barriers. Now, I listen more to the patient.” Junction Medical doctor Mike Jongerius concurs. “When people see there’s a choice, it empowers them,” he says. “This leads to more commitment that they’re going to take action.”