How the geography of cultural, access, and demographic differences impacts patients in the United States

By Carson Rolleri, ASCO Communications

Exciting new breakthroughs in cancer research are helping to make great strides in what is possible for patients with cancer. But they are not necessarily leading to equitable disease outcomes.

According to the Centers for Disease Control and Prevention (CDC), while the overall age-adjusted incidence of cancer is lower in rural areas than urban areas, rural areas have higher cancer death rates. This difference in mortality is growing wider over time.¹ In these instances, new cutting-edge therapies are not enough.

“Compared with urban communities, rural communities tend to have higher poverty rates, more elderly residents, and residents with poorer health,” said Jasmine Kamboj, MD, a member of ASCO’s Health Equity Committee and Rural Cancer Care Task Force. “These patients may not be aware of the necessary screening modalities, are diagnosed at later stages, have overall worse outcomes, for many reasons have lesser interest for accrual on clinical trials, and experience negative psychological and financial impacts because of time spent traveling for treatment. They also have deficient knowledge of the financial and social resources that may be available for support.”

The reasons for this disconnect between rural and urban disease outcomes are complex and live at the heart of the many disparities that affect cancer care. Cancer health disparities is a term commonly used to describe differences in incidence, prevalence, mortality, and burden of cancer related to conditions among specific populations, including racial and ethnic minorities, sexual and gender minorities, older adults, and rural patients, among other groups. These disparities often intersect, as a person may belong to more than one underserved group.

“As a physician, you want people to receive the very best care possible,” said Ana María López, MD, MPH, MACP, immediate past chair of the Heath Equity Committee. “We know that cancer treatments have improved. People are living longer. Survivorship is growing. But in general, you can’t say this is true for all different types of patients. And because of that, it’s important to think about why those differences exist. The first step is understanding this source of the difference, then developing approaches that will help to improve those outcomes.”

While there are many factors affecting geographic cancer health disparities in the United States, access to care is certainly one of them. According to ASCO’s 2017 State of Cancer Care in America report, oncologists tend to live in metropolitan areas, with only 761 hematologists and oncologists (6%) having at least one rural practice location. In contrast, more than 59 million Americans (19%) live in U.S. Census–designated rural areas, meaning that there is approximately one oncologist per 100,000 rural residents, compared with five oncologists per 100,000 urban residents. This low oncologist density number is even lower in Montana and Oklahoma, where 44% and 33% of residents, respectively, have no access to oncologists with rural practice sites.²

This is a problem that is felt acutely by patients and caregivers living in remote areas. According to ASCO’s 2018 National Cancer Opinion Survey, four in 10 rural Americans who have or had cancer (40%) say there aren’t enough doctors specializing in cancer care near their home, compared to 22% of urban and suburban patients who say the same. This, in turn, affects how much time rural patients spend traveling: on average, patients in rural areas typically spend 50 minutes traveling one way to see their cancer doctor, versus 30 minutes for patients in urban or suburban areas. That’s 66% more time spent traveling one way to see a cancer care provider.³

When this barrier to care is taken away, patients have a chance of a better disease outcome, regardless of where they live, according to a recent SWOG clinical trial. The trial demonstrated that when rural and urban patients had equal access to cancer care, they had similar outcomes. Previously, rural patients had experienced worse survival rates than their urban counterparts. The data from the clinical trial suggest that improving access to uniform treatment strategies for all patients with cancer may help resolve this disparity in cancer outcomes.⁴

“It can be difficult to conceptualize how differently some of our patients live,” said Dr. López. “Some of our patients might not have access to running water. Some of our patients might not have access to regular heat or air conditioning. They might be out in an area where there will only be one other person for a mile or two. And that may be difficult to conceptualize when we are thinking about treatment, but it’s so important. We need to ask more questions. We need to understand what our patient’s day-to-day is like so we can provide him or her with better resources and treatment options, and really consider what is doable for our patients.”

While the challenges that rural communities face when it comes to cancer care access are very apparent, the issues that geographically underserved populations face are complex and as different as each environment is to each other. This calls for a better understanding of the geography of treatment disparities, which includes exploring the intersection of where people live with other factors like racial identity and socioeconomic status. 

“Every single one of these underserved environments is very different and has unique challenges,” said 2018-2019 ASCO president Monica M. Bertagnolli, MD, FACS, FASCO. “There are some common themes, though. And one common theme is that cancer care is complicated. In under-resourced areas, it can be much more difficult to coordinate care and to assemble a multidisciplinary team. That is something that ASCO is uniquely positioned to support: to find ways to link local providers to the team that can help them take care of their patient. While that will look different for every setting, the central theme is tailoring care through collaboration and support of the local team.” 

ASCO is involved in programs and initiatives to better address this complicated issue. The myriad of programs highlight both the complexity of geographic health disparities as well as the importance of collaboration across disciplines and specialties to deliver more equitable cancer care, together. 

ASCO’s Mission to Improve Access to Care

ASCO’s organizational mission is to conquer cancer through research, education, and promotion of the highest quality patient care. To work toward this mission, ASCO is committed to advocating for access to care and improving quality of care for every individual. ASCO is actively involved in initiatives to reduce health inequities and disparities in cancer care to help accomplish this goal. Established in 2003, originally as a task force on health disparities, ASCO’s Health Equity Committee was created by the ASCO Board of Directors to lead ASCO’s health equity initiatives, guiding the Society’s strategy to address health care disparities and improve health care equity across the cancer care continuum. The committee’s mandate includes identifying and executing actions that could help make cancer care more equitable; and focusing on education and awareness, workforce diversity and development, policy and advocacy, research, and quality of care, specifically for medically underserved populations and communities. 

ASCO’s Rural Cancer Care Task Force

Inspired by the 2018-2019 presidential theme, the ASCO Board of Directors identified access to cancer care in rural settings as a priority issue and established the Rural Cancer Care Task Force. The task force will delve deeper into the complexities of rural cancer care, providing a needs assessment along with a proposed strategy to help improve access to care for these underserved patients. To accurately address the breadth and depth of the factors that affect access to cancer care in rural areas, the Rural Cancer Care Task Force consists of a variety of ASCO volunteers with different backgrounds. They include members of the ASCO Board of Directors, ASCO’s Conquer Cancer Foundation Board of Directors, and representatives from several relevant ASCO volunteer groups including the Health Equity Committee, Cancer Survivorship Committee, Clinical Practice Committee, Quality of Care Council, and State Affiliate Council.

ASCO Town Halls: Listening and Learning in Diverse Communities

Although ASCO has long been working for a more equitable cancer care system, Dr. Bertagnolli brought access to care to the forefront with her 2018-2019 presidential theme. “Caring for Every Patient, Learning from Every Patient” emphasizes ASCO’s mission to ensure that every patient can access the high-quality cancer care that they need. This theme reinforces the notion that care providers must consider the whole patient, not just the disease, to provide the best care.

“Our health care systems need to reach all the way to the individual doctor-patient relationships to be truly effective,” said Dr. Bertagnolli. “This theme ties ASCO’s lofty goals to individual, measurable results that every patient with cancer can see and benefit from.

“As a professional organization, we are really dedicated to serving our patients and equity of care. Cancer is a great leveler, and impacts people from all walks of life. However, your ability to survive a cancer diagnosis or get the treatments that benefit you does depend on other factors. It is on us to promote the best care for all individuals, not just patients that happen to be in higher-resource areas.”

Putting the words of her presidential theme into action, Dr. Bertagnolli and other ASCO leaders have and will be traveling to local communities around the United States to moderate question-and-answer sessions and have thoughtful conversations with patients, survivors, caregivers, and oncology professionals. Through these meetings, ASCO will learn more about the vital needs of patients in these communities. Members who participate in these town hall sessions, “ASCO in the Community: Listening and Learning From Our Patients,” have begun to share the knowledge they’ve gained in a series of blog posts on ASCOconnection.org, and takeaways for patients are shared on Cancer.Net, ASCO’s patient information website.

“ASCO is an organization that exists to serve its members,” said Dr. Bertagnolli. “One of the wonderful things about ASCO is that our membership is incredibly diverse. Not only is it diverse internationally, but even in the United States, our membership can be as diverse as the patients we serve. The reason for the ASCO Town Halls was to get a better understanding of all the challenges that ASCO members face across the United States.”

These trips have spanned geographic regions from Appalachia to Puerto Rico. Each community is different and experiences the challenges of health disparities and cancer care access differently.

“These ASCO Town Halls are all taking place in areas that have underserved populations, but it is much less about geography,” added Dr. Bertagnolli. “This can be because of environmental factors, remoteness, or possible socioeconomic factors in dense urban areas. It’s much more about cultural, demographic, and resource differences.”

Laredo, TX, is one of the places that Dr. Bertagnolli and ASCO leaders visited. A border town on the edge of Texas and Mexico, 90% of the population is Hispanic, and many members of the cancer care continuum are bilingual. However, many of the patients living in Laredo are underinsured, and there are only three oncologists for the city’s population of 300,000.

“Laredo has a very underserved population,” said Gary Unzeitig, MD, a Laredo-area ASCO member and ASCO Town Hall participant. “Most of the patients seek their care by word of mouth. Almost every patient I see has already checked me out a little bit, so there’s a lot more trust and readiness to move ahead. For a population of 300,000, having only three medical oncologists is tough. But there’s a reason that we all live here—we like it, and there’s a strong sense of community.”

State of Cancer Care in America: Rural Access to Care

As part of its State of Cancer Care in America (SOCCA) event series, ASCO will convene a panel of experts to explore the complex influence of rural environments on cancer-related outcomes. The event, taking place on April 10, 2019, at the National Press Club in Washington, DC, will also highlight concrete learnings, promising partnerships, and scalable approaches that could make the difference in improving cancer outcomes and care delivery in rural regions. Follow @ASCO on Twitter or visit ASCO in Action for updates on how to attend and stream the event live.

Resource-Stratified Guidelines

ASCO’s resource-stratified guidelines help medical professionals outline appropriate methods of treatment and care based on the level of health care resources available in the country, region, or practice area where care is being given. These guidelines establish consistent minimum standards for screening, while also realistically accounting for differences in resource levels and health care systems around the world. 

Learn More About Cancer Health Disparities

ASCO University offers a free course to help oncology team members better understand the many factors of health disparities that can affect cancer care. The course, “Disparities in Cancer Care: Take Action!”, is composed of three sections and examines issues from the point of view of a patient, a provider, and an institution. Upon successful completion of this course, participants may request Continuing Medical Education, Nursing, and Pharmacy credit. 

ASCO’s Quality Initiatives

The number of rural oncology practices participating in ASCO’s quality programs is increasing. Those programs are tiered in terms of both pricing and staff hours needed, so small practices can select the programs and services they need:

• Quality Oncology Practice Initiative (QOPI^®): A free program wherein practices can report on more than 190 evidence-based quality measures and receive individual performance scores by practice, site, and provider, as well as benchmarked scores aggregated from all participating practices. A small practice can submit data, and see its results against national benchmarks, then make adjustments to improve its care
• QOPI Certification: A 3-year designation for practices that have met certain benchmarks and passed an extensive onsite survey of chemotherapy infusion safety standards. By meeting national standards, patients and the community know the practice is committed to high-quality care.
• Practice Consulting Services: A variety of services that practices can purchase individually as needed, allowing small practices to save money by signing up only for what they need.
• Quality Training Program: A professional development program that brings together oncology teams to learn how to design, implement, and lead successful quality improvement activities in their practices.

Additionally, ASCO launched the Improving the Delivery of Cancer Care in Medically Underserved Communities Grant Program in 2016 to help improve cancer care delivery for selected practices. As part of the program, practices complete ASCO’s Quality Training Program, participate in QOPI^® reporting rounds, and engage in an individualized, structured, 2-year quality improvement plan. Program participants will then report their outcomes at the ASCO Annual Meeting and the ASCO Quality Care Symposium and publish their findings in the Journal of Oncology Practice.

ASCO is also currently involved in improving access to clinical trials for patients in rural areas through the efforts of its Research Community Forum (RCF). Established in 2010, the RCF began as a resource to support clinical research sites in community-based settings, and has since expanded to serve as a go-to network for all members of the oncology research community, including physician investigators, research staff, and those involved in community-based and academic-based research programs.

Through its portfolio of resource materials and its Annual Meeting, the RCF provides a forum for researchers to share best practices, identify challenges to conducting clinical research, and brainstorm effective strategies and solutions. Throughout the year the RCF Council develops and disseminates solutions to address barriers to conducting clinical research and facilitate clinical trial participation and accrual. Resources that facilitate the construction and management of clinical trials, especially in the community setting, are available online. 

Ensuring Ethical and Effective Cancer Health Disparities Research

In 2017, the American Association for Cancer Research (AACR), the American Cancer Society (ACS), ASCO, and the National Cancer Institute (NCI) released a joint position statement to guide the future of cancer health disparities research, including geographic health disparities. The statement, published simultaneously in the Journal of Clinical Oncology, Cancer Research, CA: A Cancer Journal for Clinicians, and on the NCI website, identified numerous factors that contributed to disparities in care. These included sociodemographic, health care access, and lifestyle factors; and biologic and genetic differences.

The statement identified five key priorities for future research:

• Define and improve data measures and tools for cancer disparities research
• Address disparities in cancer incidence
• Address cancer survival disparities
• Improve community engagement in cancer research
• Redesign cancer clinical trials to acknowledge and address cancer disparities

The statement also outlined how investigators should approach disparities research, with a strong focus on community inclusion, high-quality research tools, collaboration between academic and community researchers, transparency for research participants, ample time to perform community-based research, and the promise of cancer care systems to intervene when a disparity is identified.

References

1. Henley SJ, Anderson RN, Thomas CC, et al. MMWR Surveill Summ 2017;66:1-13.
2. American Society of Clinical Oncology. J Oncol Pract. 2017;13:e353-e394. Epub 2017 Mar 22.
3. ASCO. National Cancer Opinion Survey 2018. Accessed Nov 12, 2018.
4. Unger JM, Moseley A, Symington B, et al. JAMA Netw Open. 2018;1:e181235.