BY KELLY OMAN PHOTO BY GREGG GOLDMAN
Though people living in rural communities across the United States may be less likely to get cancer, they are more likely than people living in suburbs and cities to die from it. That’s what is known as a health disparity, a term that can sound rather abstract. The problem, however, is anything but.
To get a better grasp of the term “health disparity,” here’s a realistic hypothetical:
Susan, a 55-year-old woman living in Reynolds County, located in the Ozark Foothills Region of Missouri, knows she should have yearly mammograms. But she’s between insurance plans since losing her job, and her town hasn’t had a primary care doctor since the local clinic closed. After a quick internet search, Susan learns the nearest mammography center is over an hour away, but she’s having trouble finding out how much the scan will cost. If she fills the tank of her car for the trip, she’ll have less money for groceries that week. Feeling healthy, she decides to put off the mammogram. She has other concerns that feel far more real than the possibility of cancer.
Susan’s situation is far from unusual. Even among women covered by Medicare in Reynolds County, only 28% are getting their annual mammograms, the lowest screening rate in the state. Though most of us, like Susan, are aware of the recommended guidelines for cancer screening, our ability to follow through is very likely affected by where we live. Women in 19 rural counties in Missouri have to travel more than 45 minutes each way to get a routine mammogram. While women from these same counties are less likely to be diagnosed with breast cancer, they’re more likely to die from it because the disease is detected at later stages.
Thanks to routine screening, effective treatment and efforts in prevention, the rates of death due to cancer are declining across the country — but not in much of rural America. The Centers for Disease Control and Prevention reported in 2017 that cancer mortality rates in urban areas were dropping by 1.6% per year. But in rural areas, that decline was just 1% per year. The 25 rural counties served by Siteman Cancer Center, for example, have much lower rates of mammography and colorectal cancer screening, and higher rates of smoking and inactivity compared with non-rural counties. This results in high rates of late-stage diagnoses for all cancer types. In most cases, the earlier a cancer is found and treated, the better the chance of survival.
This isn’t to say that cancer disparities aren’t found in cities, too. Some urban neighborhoods experience the same obstacles to cancer care as rural towns, including unreliable and inconvenient transportation; lack of health insurance and unmanageable costs; a lack of available doctors and clinics; insufficient broadband service (or lack of access), which limits access to health information; and lack of access to potentially lifesaving clinical trials.
Healthy living and regular screening are the two most effective ways to stop cancer in its tracks, but hospitals and clinics in medically underserved areas are overburdened and often just don’t have the time and staff to educate a community about prevention and track whether people receive timely screening. And people without health insurance may not seek medical help until their symptoms demand treatment. By then, it may be too late.
Rural towns and urban neighborhoods may share some of the same obstacles to cancer care and prevention, but solutions effective in one place may not work in the other. In most big cities, women who might otherwise miss a regular mammogram — perhaps because it requires hours away from work or isn’t easy to get to using mass transit — may still get annual screening because a mobile mammography van comes to them. And in St. Louis, for example, Siteman Cancer Center sends teams of health care professionals into the community, where they attend local events and appear at other gathering places to talk about cancer prevention and screening. Many small towns in remote areas don’t have these kinds of opportunities.
At its root, the problem stems from a lack of access to resources to get and stay healthy. Health education, walking trails, well-stocked grocery stores, screenings, hospitals and internet connections — all of these can be hard to find in small rural towns. But for several years now, researchers at Washington University have been working to build networks out of the existing organizations, institutions and individuals in rural communities to address the obstacles to health care and information. “It takes time to achieve lasting change in public health,” says Graham Colditz, MD, DrPh, director of the Division of Public Health Sciences at Washington University School of Medicine. “We have to take the time to learn about a community and to build relationships there before we can identify what will help. And solutions that work for one town might be completely ineffective in another, so it takes a long-term commitment to each community.”
Defining the problem, finding solutions
Researchers tend to work on problems that come with a wealth of data; it’s hard to generate solutions if you don’t have the information you need to define and understand the problem. The databases that inform health care systems may tell us how many people in rural areas are being diagnosed with late-stage cancer and how many people are dying, but they may not include the data that helps explain why. That’s because many of the people who don’t get regular screenings aren’t included in the data generated by health insurers, hospitals and clinics. Phone, internet and in-person surveys are the next best means of collecting information, but these are difficult to perform in locations where cell or broadband service is spotty, or where people live miles from one another and don’t tend to gather in large groups.
Instead, health care researchers must rely on less formal means of learning about a community. “People who live in remote areas with less access to health care won’t be in the system, so ‘big data’ will never be able to identify their needs,” says Colditz, who also is the director of prevention and control at Siteman Cancer Center. “We can partner with existing clinics to help meet needs but engaging in the community is key to reaching those who aren’t accessing the system regularly, if at all.”
A recent award from the National Cancer Institute will expand these and other efforts to better define the problem and create effective solutions. Washington University, recipient of the $7.6 million award, will create a research center that will work to eliminate cancer disparities with “rapid-cycle” studies that put findings into practice quickly. This initiative will focus on rural and other disadvantaged populations in 82 counties in Missouri and southern Illinois. Colditz, co-primary investigator of the research program, will work with a team of Siteman researchers, including Ross Brownson, PhD, primary investigator of the effort and director of Washington University’s Prevention Research Center.
A matter of trust
But people can be skeptical of researchers from big institutions coming into their community to collect data. “And rightly so,” says Marquita Lewis Thames, PhD, MPH, a postdoctoral research associate in the Division of Public Health Sciences. “When you consider historical cases like the Tuskegee experiment, in which black men with syphilis were withheld treatment for 40 years without their knowledge so researchers could find out what would happen. This and other events like it make people wonder if researchers have their best interests at heart.”
IT TAKES TIME TO ACHIEVE LASTING CHANGE IN PUBLIC HEALTH.WE HAVE TO TAKE THE TIME TO LEARN ABOUT A COMMUNITY AND TO BUILD RELATIONSHIPS THERE BEFORE WE CAN IDENTIFY WHAT WILL HELP.
Lewis Thames and others at Washington University are working to eliminate the barriers to trust. Jean Hunleth, PhD, MPH, an anthropologist working in the Division of Public Health Sciences, says she had trouble finding participants for a study located in the Missouri Bootheel, a largely rural area in the southeastern part of the state. To try to overcome the problem, she and members of the research team spent time in one small community getting to know people. “We visited the church, a diner, a hardware store, and we talked to people about what their lives were like. Because we were there to listen, not collect data, people were eager to share.”
Hunleth considers the experience a success, even though it didn’t result in new participants for the study. “Our conversations were insightful,” she says. And she notes that, in effect, the team chose not to define the town as a place where barriers to cancer screening are high. Instead, they got to know it as a place “where people live an everyday life in all its unpredictability.” And this kind of reframing can lead to more accurate information. Hunleth adds: “When survey questions and categories are based on city-centric assumptions of what life is like in rural areas, the results are skewed. Knowing the community changes the questions, which in turn changes the results. Every interaction also informs how you interpret the data. People need to trust you and see your commitment before you can get to know them.”
Vetta Sanders Thompson, PhD, MA, co-director of the university’s Center for Community Health Partnership and Research, fosters these same values of trust and commitment through community-education efforts. In 2013, Sanders Thompson helped start the Community Research Fellows training program in St. Louis, a 17-week class designed to give people the tools to engage in research in the towns where they live. Participants in the program, from health care and government workers to average citizens wanting to make a change, share a goal: improving the health of their communities.
This training program was recently adapted for use in southern Illinois. Called REACH (Rural Education for Advancing Community Health), it involves two days of eight-hour training. REACH’s initial class of 26 first met on a sunny Friday afternoon in July in a high-school cafeteria in Vienna, Illinois, a small town about two hours southeast of St. Louis.
THIS SUMMER, A GROUP OF PEOPLE MET IN VIENNA, ILLINOIS, TO PARTICIPATE IN A WORKSHOP AIMED AT ADDRESSING DISPARITIES IN CANCER CARE IN THEIR COMMUNITIES.
Photo by Greg Goldman
In sessions led by experts in everything from grant-writing to communication, participants talked about their experiences with rural health care and worked together to formulate hypothetical research scenarios that might lead to solutions. One of these sessions focused on ways to involve community members in every step of the research process. Throughout the day, Lewis Thames emphasized the idea that people who are affected by an issue need to have a voice in how that issue is resolved. She demonstrated this by asking participants and REACH faculty to form groups, then work together to keep balloons from touching the ground. The task got harder as more balloons were added — and the more challenging the task got, the more important it was for team members to communicate with each other. “Research starts with what the community needs,” Lewis Thames told the teams. “The community needs to have a way to voice those needs and have a say in the solution. Your expertise as a community member is just as valuable as my expertise as a researcher.”
For Sanders Thompson, the goal is trust: “When people feel ownership of an initiative, there’s greater buy-in and, in the case of health interventions and prevention, better results.”
Focusing on prevention
Some at Washington University are building community and civic partnerships in rural areas with an aim to increase the healthy behaviors that prevent cancer in the first place. The cancer-prevention message is pretty straightforward: eat healthy food, maintain a healthy weight, get exercise, drink alcohol moderately or not at all, use sun protection, get regular screenings. But, for example, when financial stress is present — when a person is facing potential eviction or struggling to feed their family — making nutritious meals, exercising and engaging in other healthy activities can be difficult, if not impossible. In the 10 counties that make up the Missouri Bootheel, 17 to 31% of residents live below the federal poverty level, which is $20,780 for a family of three. (The national average is 12%.) These same counties see some of Missouri’s highest rates of all types of cancer, especially those that can be prevented with behavioral changes, such as lung and colorectal cancers.
Brownson, a member of Siteman Cancer Center’s research team, and colleagues want to make healthy living easier and more sustainable in under-resourced areas. He works with Dixie Duncan, a community-health research coordinator based in the Bootheel. While many see only the lack of resources available in this part of the state, Duncan, a member of the community, chooses to see what they do have: eagerness to change. “Some of our least populated, high-poverty communities have shown the most enthusiasm for making healthier changes,” she says. “I’ve witnessed first-hand the health challenges this region faces. But lack of resources has not discouraged residents of these communities from trying to improve the situation. Rather, it has increased their resiliency and determination to better their health and that of their neighbors.”
In particular, Brownson, Duncan and colleagues are addressing the low rates of physical activity in the Bootheel. Physical inactivity is thought to cause 12.4% of breast cancer and 12% of colon cancer. People living in rural areas walk less than those in suburban areas; in fact, the rate of walking is 13% lower. Many rural areas lack the trails and sidewalks that make outdoor recreation safe, and few indoor fitness facilities exist outside of metro areas. Further, those making long commutes to sedentary jobs may negate some of the positive effects of a regular exercise program.
In response, Brownson and colleagues have helped develop more than 30 accessible, safe trails in the Ozark region. And they’ve been successful in helping people add physical activity to things they already enjoy doing, including spending time with their families. “We want to help people prioritize health by building it into their pre-existing priorities,” Brownson says. For instance: “They might attend a family event at one of the new trails and, while they’re there, decide to go for a walk with their kids.” In other words, instead of asking people to add another obligation to their lives, the team is helping make healthy choices more convenient and integral.
Building access to screening and follow-up care
Of the people treated at Siteman Cancer Center who live in a rural ZIP code, 48.5% are in a medically underserved area, where there are too few primary care providers to meet the needs of the area. These same ZIP codes also often represent high rates of poverty and a large elderly population. Added together, these factors may mean that people can’t afford the health care available to them or have trouble locating resources and getting the care they need.
Consider this: A healthy 65-year-old man decides to save himself a trip to the doctor by doing an at-home fecal immunochemical test as a routine colon cancer screening. The results show signs of blood in his stool; he needs a follow-up colonoscopy. But his home is a three-hour drive from the nearest gastroenterologist who can do the procedure. He knows his car won’t survive the trip, and even if it did, he can barely afford the gas. He reads about the symptoms of colon cancer online and decides to watch for symptoms and forgo the colonoscopy.
What he doesn’t know is that the county he lives in offers a medical transportation network, and that his Medicaid insurance would help cover the cost. But even for those who are aware of resources like this, figuring out how to use them can be difficult.
Situations like this play out daily in small towns across the country. When routine screening poses daunting problems, any follow-up care is likely to present similar hurdles. And this means that cancer is often not diagnosed — and treatment begun — until the disease becomes severe. “Colon cancer has high rates of treatment efficacy when caught early, but so many people face significant hardships in accessing the care they need to catch it early,” explains Aimee James, PhD, MPH, a professor of surgery in Washington University’s Division of Public Health Sciences. James works with Southern Illinois Healthcare, a nonprofit system of hospitals, clinics and other rural health care facilities, to close the gap between screening and follow-up without placing more burden on patients and clinics.
To do that, her team works with the doctors and nurses in small-town primary care clinics. The goal is finding solutions that fit the community. “We’re trying to make it easier for providers to educate their patients about screening during routine appointments. And we want to make the existing resources more easily available and more attractive for people to use.” James notes that financial assistance and transportation services make a difference, but they won’t be used if people working in the health care system aren’t trained to help people access them. Her team helps provide that training.
Colditz and six of the health systems affiliated with BJC Collaborative, a group of eight independent, nonprofit health care organizations in Missouri and Illinois, are doing similar work to address disproportionately high rates of smoking and lung cancer in rural areas. They have built a tool kit that includes educational material and other resources designed to make it easier for rural hospitals to help patients quit smoking, and to provide screening for those at risk for cancer. “Each hospital uses these tools differently,” Colditz says, “but the point is to help make the resources already in place — medical staff, technology and other support — work more efficiently.”
Bridging the digital divide
As rates of cancer deaths in the U.S. continue to fall, more must be done to ensure rural areas don’t fall even further behind. Technology, including broadband service and the devices that connect to it, can make a big difference in health and health care for those who are connected. But what about communities where people can’t afford those devices and, even if they could, broadband infrastructure hasn’t reached them or isn’t reliable?
Sometimes insufficient technological infrastructure means taking a low-tech approach. “We can’t reach people in rural settings with information about cancer prevention, screening and follow-up care in the same ways we might in an urban setting,” says Colditz. Because he wants to talk directly to the people who live in small rural towns, he writes a syndicated monthly column about disease prevention that is published in the newspapers they read. “People in the city might think it’s an outdated approach because they read the news on their smart phones or tablets, but some people don’t have broadband access and rely on the local paper for news.”
While Colditz meets readers where they are, others are working to improve rural broadband access. Lisa Klesges, PhD, professor of surgery in the Division of Public Health Sciences, works with the Broadband Cancer Collaboration, an initiative sponsored by the National Cancer Institute and the Federal Communications Commission. This group wants to bridge the digital divide by increasing broadband access in rural areas. This would help people living far from health care connect with doctors and other health care professionals through telemedicine. “If someone in treatment for cancer has questions about side effects, they can monitor their vitals, educate themselves using online resources and communicate with a care provider electronically,” says Klesges. “This saves them the time and expense it would take to see their doctor in person, and it allows providers to reach more people in a time-efficient manner.” The hope is that increased broadband access may ultimately close what is probably the biggest obstacle in rural health care: the distance between people and doctors.
It will take innovative approaches — and the partnerships between institutions, communities and other organizations that make them possible — to lower the rates of cancer mortality in rural America. “In five to 10 years, we could see the cancer rate falling in rural towns at the same rate as it is for the rest of the country,” Colditz says