March 20, 2018
By Kristi Birch
Say the words "cancer research" and many of us will picture white-coated scientists peering into microscopes, trying to unravel the biological mysteries of the disease. But sometimes research isn't about what cells or genes or proteins do. It's about what people do.
Angela Watson, M.B.A, oversees this kind of behavioral research as a project manager for Allen Greiner, M.D., MPH, professor and research director in the Department of Family Medicine at the University of Kansas Medical Center. She has been interested in healthcare since serving in the Navy, where she worked in aerospace physiology and shipboard healthcare, later earning a master of business administration degree that included a health care leadership focus. For the past decade, she has worked with Greiner's research team on studies designed to improve the rate at which people in low-income and underserved populations get screened for colorectal cancer.
More than 50,000 Americans die from colorectal cancer every year, according to the American Cancer Society. The only cancer that claims more lives is lung cancer.
But it doesn't have to be that way. If this cancer is found in time, it's one of the most curable forms of the disease. "One of the things we tell people is that is that most colon cancer-up to 90 percent-is treatable and curable if caught early," said Watson.
Early screening is also prevention: Colorectal cancer starts from abnormal growths called polyps that turn into cancer over time, typically 10 to 15 years. During a colonoscopy, the most common screening for colorectal cancer, those polyps can be removed before they become malignant or, if already cancerous, while they are still localized and do not require further treatment.
Watson would know. Seven years ago, while she was already working with Greiner's group, her doctor ordered a colonoscopy. Doctors advise most people to get screened beginning at age 50. Watson was just 39, but her doctor was looking for the cause of her anemia, which could have been bleeding in her colon. During the procedure, a polyp was removed, which is a routine occurrence. To their surprise, there was a small carcinoid tumor inside the polyp. Because they'd found the tumor when it was tiny, no more treatment was necessary.
Since her diagnosis, Watson says she has more empathy for people who participate in their studies. "Now I sometimes use myself as an example," she said. "My own experience has changed how I approach and view my work. I understand on a personal level that fear can be a big barrier to screening for some people because I have felt it myself."
Breaking through barriers
Fear of finding cancer is not the only barriers to screening Greiner and his team encounter. Some people are revolted by the idea of a colonoscopy and of a stool sample test, another screening method that detects blood in the stool as well as abnormal DNA coming from a malignancy. Other people assume that if something is found, nothing can be done, anyway. Misinformation is also a barrier: some people have heard that a colonoscopy, or surgery to treat it, exposes the cancer to air and thus causes it to spread. Others have a fundamental mistrust of physicians and the health care system. And for many, getting screened is a problem of logistics: they don't have transportation, child care, sufficient time off from work, or health insurance.
Ten years ago, Greiner's group began trying to increase screening rates for patients who visit safety net clinics in Kansas City, Kansas, which serve low-income people. They brought a computer program into these clinics, where the program walks patients through a series of educational screens that deliver quick, accurate information about colorectal cancer.
The program, called Touch2Screen, also asks the patients personal questions about potential barriers to screening. If, for example, a patient fears catching germs during screening, the program will provide information about the risk of germs. The program also guides patients through a decision tree for screening, including asking them if they would prefer a colonoscopy or stool test. Watson points out that even though many consider colonoscopy the gold standard of colon-cancer screening, a stool test, which requires patients to collect and send a stool sample to a lab, is just as accurate. If the stool test finds evidence of cancer, a colonoscopy is the next step, but the test is an first option for people averse to either the preparation for or the invasiveness of a colonoscopy, or who can't afford one.
Touch2Screen then offers step-by step-options for how to get screened, so that by the time the patient has clicked her way through the program, she has a plan. Greiner and Watson work with organizations such as Wyjo Care, which in some cases arranges free colonoscopies, to help patients who cannot afford the screening. Patients receive a follow-up phone call six months later to see if they got screened.
And the program works: "In the Touch2Screen study, we have found that these patients are more than twice as likely to get screened as those who do not get a specific plan," said Watson. "Just that extra three to four minutes spent making a plan really makes a difference."
Working with the Center for American Indian Community Health at KU Medical Center, the researchers have just finished their study taking Touch2Screen to Native Americans reservations in Kansas and South Dakota. More than 90 percent of Native Americans say they intend to get screened, but most do not follow through. "This population can be much more skeptical of western medicine, so you must have the support of their tribal council and community health workers," said Watson. The study is completed, and the team is currently analyzing the data to find out how much of a difference in screening rates the Native American Touch2Screen program made.
They're also now returning to the safety net clinics and recruiting people who speak Nepali in addition to people who speak Spanish and English. And they're using what they've learned so far. "We found in earlier studies that when we call people back for follow-up, some [who didn't get screened] switched their preferred test type-from colonoscopy to stool test or vice versa-often because they talked to their doctor," said Watson. "So now, if they don't get tested, we are going to ask them to go through the program again, and then they will get a second six-month call. We'll see if the second conversation will spur them. We think it will."
For Greiner, the results of their work reach beyond colon cancer: "One of the biggest lessons we've learned is that if patients set a few simple goals to help them move forward with the screening process they are much more likely to complete screening, whether they are in safety net clinics or other settings. We hope we have learned some lessons that can be applied not just with colorectal cancer screening but with other preventive services as well."
A personal example
Since these studies began, a few people have tested positive for cancer. The researchers work hard to help them navigate the health care system, find care, or get Medicaid coverage if necessary. "We have made a commitment to people in these communities; we do not just tell them they have a positive test," said Watson. "We walk them through the course of finding care."
Five years after her cancer diagnosis, Watson had a follow-up colonoscopy and tested positive for a carcinoid tumor again. This time, she needed resection surgery. Today, she is once-again cancer-free, and can share that experience as well. "Over the last 10 years I've spoken with many people who have noticed small changes in bowel habits or blood in their stool, but they haven't been screened because they fear the test will show something bad," she said. "Being able to give people a personal example helps me connect with them and shows I understand their fears. And they realize that even if they are screened and receive bad news, there is hope and a very good chance they will be cured."