Addressing Cancer Disparities Across Geography

Geographic location of a patient directly impacts access to care, including preventative screenings and early detection. Moreover, many additional SDoHs, including a patient’s self-identified race, ethnicity, gender, and socioeconomic status, exhibit geographic patterns, which create opportunities for place-based and personalized interventions. Elisa M. Rodriguez, PhD, MS, Inaugural Vice President and Associate Director of Diversity, Equity, and Inclusion and Director of the Community Engagement Resource of Roswell Park Comprehensive Cancer Center, highlighted the significance of community and introduced a framework for equitable partnerships to promote cancer prevention and control. Dr. Rodriguez provided an overview of a 3-part approach used by Roswell Park to identify and address the needs of the populations served. She noted challenges to addressing inequities across various localities and opportunities to create meaningful change and build trust.

Acknowledging the unique challenges in resource allocation areas across settings, Dr. Rodriguez noted that while urban centers and their surrounding suburbs may face a shortage of health care professionals, this issue is exacerbated in rural areas. In examining county level specifics, Dr. Rodriguez indicated that rural areas may have additional neighborhood stressors that lead to “poorer aggregate health outcomes.” Additionally, rural areas may have a confluence of impacting factors, such as poorer educational attainment, lack of productive economic resources, transportation resources to health centers, and other inequities as they pertain to food insecurity and the opioid epidemic. Although present in urban areas, these factors are magnified in rural areas with populations and resources that are geographically dispersed, contributing to “diseases of despair” as seen in areas of Appalachia (ie, drug overdose, suicide, and alcoholic liver disease).⁶

Conversely, Dr. Rodriguez pointed out that people living in rural areas often have meaningful relationships that form tight-knit community groups and partnerships. These close-knit bonds foster a sense of togetherness and support among individuals facing the challenges of cancer care in rural communities. By leveraging the power of these close relationships, with the help of adequate systemic support, rural communities can overcome geographic and socioeconomic barriers, ensuring that everyone has access to optimal care. Policymakers and providers have an opportunity to create meaningful policies and programming, responsive to community needs and inclusive of the community voice, through ongoing community engagement. Engaging in the community is essential to understanding the different layers of barriers to care that exist. Dr. Rodriguez stated, “If we don’t take the time to really engage the community and engage them in a way that increases trust, it’s really tough then to understand the nuances of those barriers.” By actively involving community members in discussions and initiatives surrounding cancer care, a wealth of local knowledge and experiences can be gathered, providing insights into the specific challenges these individuals face in accessing care (eg, financial constraints, limited health care infrastructure, transportation issues, cultural beliefs, lack of awareness about available resources). This engagement helps health care providers, policymakers, and organizations gain a deeper understanding of the unique barriers to care experienced in rural settings, and can aid in tailoring solutions to address specific needs and circumstances of these communities.⁷

Dr. Rodriguez also highlighted higher rates of medical mistrust as an invisible barrier in urban settings, juxtaposing that concerns in rural areas revolve around respect for privacy and informed decision-making. She emphasized that the central component needed to improve relations in both settings is trust, urging stakeholders and community partners to invest the time needed to develop trust as a critical resource. She noted that Roswell Park Comprehensive Cancer Center has leveraged this resource by creating a community advisory board composed of a diverse group of individuals with varied expertise, lived experiences, and ethnocultural backgrounds to guide strategic priorities at the institution.

Dr. Rodriguez also spoke about the importance of developing programming responsive to community needs. To highlight the importance of implementing programs and services to reduce disparities in care, Dr. Rodriguez discussed Roswell Park’s recent creation of a new lung cancer screening program called Early Detection Driven to You (EDDY). EDDY provides mobile lung cancer screening services to address disparities across differing areas, and has conducted 700 screenings since November 2022.⁸ Dr. Rodriguez emphasized the importance of viewing local experience as expertise, and noted that EDDY and programs like it are examples of utilizing community perspectives to drive new clinical initiatives.

Built Environment: Cancer Incidence and Mortality

The literature surrounding the link between an individual’s built environment and their associated risk of cancer is expanding. Built environment is defined as “any human-made surroundings.”⁹ This encompasses everything from green spaces to the variety of available businesses selling food and groceries, to the distance a patient must travel to access optimal medical care. Although some built-environment factors correlated with cancer screening, health behaviors, and outcomes, more studies are needed to understand specific dynamics that each facet of the built environment plays in specific cancer sites and types.^10,11 To discuss the externalities the built environment has on patients with cancer and their outcomes, NCCN convened a multistakeholder panel of leaders working to combat cancer across diverse geographic settings.

Aside from access to medical specialists necessary to complete complex treatment plans, the built environment plays an important role in helping an individual maintain a healthy lifestyle, which can impact cancer risk and recovery. The National Cancer Institute states that, “People who live in neighborhoods that lack affordable healthy foods or safe areas for exercise are more likely to have poor diets, be physically inactive, and [be] obese, all of which are risk factors for cancer.”¹² Jesse Plascak, PhD, MPH, Assistant Professor at the Division of Cancer Prevention and Control at The Ohio State University, stated that individuals who were diagnosed in areas with less infrastructure investment had worse breast cancer outcomes than those living in areas with more infrastructure investment.¹³ Features of poor infrastructure, such as substandard housing conditions and excessive garbage, are “neighborhood stressors” that can negatively impact community members through physiologic stress pathways and maladaptive coping strategies, leading to poorer health behaviors. Studies regularly show that access to healthy food and proper green spaces leads to better physical and mental health outcomes.^6,14 Mary Charlton, PhD, Assistant Professor of Epidemiology at the University of Iowa, Director of the State Health Registry of Iowa/Iowa Cancer Registry, added that in her state, there is not only an ironically small amount of public green space for a state so dependent on agriculture but also the trend of replacing locally owned grocery stores with bargain stores such as Dollar General, another concerning example of poor investments taking place across geographies.

Panelists noted that transportation to cancer treatments, and the associated costs (eg, car service/taxi, car maintenance, tolls, gas), is one of the main barriers patients face through their built environment. Each panelist acknowledged that patients who had to travel farther to receive appropriate care were more likely to decline it or seek suboptimal care. Janette Merrill, MS Ed, Senior Director of Policy Programs at the American Society of Clinical Oncology, stated that the maximum determining distance for adherence to treatment was approximately a 60-minute drivetime. Research shows that transportation has been a significant barrier to access.^15,16 Both Waleed Mourad, MD, Radiation Oncology, Professor of Radiation Medicine at the University of Kentucky, and Dr. Charlton pointed out that with modern cancer care, newer and more-sophisticated technology is being incorporated, requiring evermore specialization, which is difficult to access in rural cancer centers.

Although every patient with cancer faces numerous obstacles related both to their diagnosis and to the built environment, the panelists agreed that progress can be made on many fronts, and specifically called on health care systems to have more open communication and information-sharing on issues such as clinical trials. As an example of how a community-based organization responds to such issues, Alma McCormick of the Crow Nation, and Executive Director of Messengers for Health, noted that Messengers for Health distributes gas cards for local patients and works to assist local health authorities to keep productive communications with the tribal citizens. Ms. McCormick noted several ways that Native American reservations are impacted by neighborhood stressors. She stated, “My reservation has no grocery stores, and because the closest grocery stores are too expensive for many of the poorer residents, Crow people must travel 50 miles to Billings, Montana, to get anything in bulk or at affordable prices.” She also pointed out that there are elevated mercury levels in the tribe’s waterways and subpar medical facilities on the reservation. She also noted that the historical mistrust between tribal members and medical authorities creates a substantial communications barrier, causing delayed diagnosis, misdiagnosis, and missed opportunities for clinical trial participation.

Dr. Mourad discussed sending medical professionals directly to the high-impact geographic areas, whether through mobile units or through specialized placement/training programs. Dr. Charlton advocated for removing reimbursement barriers associated with certain telehealth services, such as genetic and nutritional counseling, while incentivizing comprehensive cancer centers to connect and work with their rural counterparts, streamlining interoperability and clinical trial participation. Dr. Plascak championed optimization of recording patient’s geographic information, which he hopes can lead to many more answers to current questions around cancer disparities by geographic factors. Ms. Merrill lobbied for the removal of specific reporting requirements for rural centers that want to take part in clinical trials, not only opening the door for more-isolated individuals to participate but also ensuring the trials themselves are more representative of the national population.

The Policy Landscape in Bridging Rural and Urban Access to Cancer

With the recognition that access to cancer care is impacted by geography, policy solutions could help bridge the gap between the divide in rural and urban access to such care. To explore the role that the government can play in addressing access issues, Congressman Brian Higgins (D-NY-26), the former Co-Chair of the Congressional Cancer Caucus, explored ways that he and other members of Congress have worked to address this issue. Congressman Higgins, who recently resigned from Congress in February 2024 and who represented Roswell Park Comprehensive Cancer Center, has been a staunch advocate and supporter of policies related to cancer care and research. He noted the importance of congressional funding and the need for members of Congress to prioritize passing legislation that truly addresses access to care to reduce the cancer-related death rate.

Congressman Higgins drew on his own experience representing a diverse congressional district that varies widely across geography, socioeconomic status, race, and ethnicity. He noted that his own district, like the districts of many other members, is home to lower-income communities, communities of color, and rural communities. Congressman Higgins noted that whether his constituents live in a rural or urban area, they all face similar issues, such as exposure to environmental problems; a lack of access to appropriate providers, from primary care doctors to specialists; and a lack of resources.

One way elected officials can help bridge some of these access gaps due to a person’s geographic location is through partnerships with providers within their districts to leverage federal funding into creative and innovative projects. Congressman Higgins discussed his long-standing relationship and partnership with Roswell Park Comprehensive Cancer Center, and how he was able to facilitate the acquisition of $1.5 million in federal funding for Roswell Park, which enabled the purchase of a CT scanner and helped establish the EDDY program.¹⁷

Transportation and distance to care are a major driving force behind access to cancer prevention, early detection services, and cancer care.^16,18 Although this is a significant barrier for rural communities, it is also experienced by many in urban areas. The partnership that resulted in EDDY serves as a reminder that there are ways to address geographic barriers in access to care by meeting people where they are. Strong communication between health systems, community-based organizations, and their elected officials, such as the one that exists between Congressman Higgins and Roswell Park, can be an example of how to bridge gaps in access to cancer care through federal funding and health policy based directly on community needs.

The Rural and Urban Divide: Innovations to Facilitate Optimal Cancer Care Across Geography

Distance to care and ability or willingness to travel are key factors in patients being able to access high-quality cancer care. During the final panel discussion of the day, panelists agreed that all patients cannot travel to academic cancer centers for their care, and that academic centers and community providers should build partnerships to ensure accessibility of specialized care. Virtual tumor boards are an efficient way to connect providers in the community to academic centers to plan and manage patient care, access specialists, and manage adverse effects of new antineoplastic drugs, including immunotherapy and cell-based therapies, while also minimizing travel burden for the patient. Ursa Brown-Glaberman, MD, of University of New Mexico Comprehensive Cancer Center, stated, “Respecting those communities, building trust with those community providers, and serving as a resource and academic center for those providers I think is critical. Patients want to be treated closer to home.” Panelists agreed that patients receiving quality care in their community is important and that many of those patients would not receive any care if they did not have access close to home.

Panelists discussed the increased use of telehealth during and following the COVID-19 pandemic and how it increased accessibility for many patients. Mobile units with telehealth capability offer patients access to telehealth in communities that may not have the infrastructure or technology to support it. Although telehealth practice advanced significantly during COVID-19, ongoing telehealth challenges include policy and reimbursement, infrastructure and technology requirements, licensure and privacy, and cultural considerations. Mei Wa Kwong, of the Center for Connected Health Policy, encouraged providers to connect with the national telehealth resource centers for support in technology requirements, workflow considerations, patient communication, and policy and reimbursement for telehealth services.

Joette Walters, RN, MSN/MBA, CEO of Tuba City Regional Health Care Corporation of the Navajo Nation, discussed the high cancer incidence in the American Indian Navajo population and how many tribal members must travel ≥100 miles in any direction to get cancer care. The burden of travel combined with infrastructure limitations, cultural differences, and trust were drivers in establishing the first cancer center on the Navajo Reservation, the first of any American Indian reservation, in 2019. The cancer center has an integrated Office of Native Spiritual Medicine, and patients can be referred if they want a traditional healer to be engaged in their care team.

Clinical trial access is also limited in some areas, and panelists agreed that clinical trial design needs to evolve to become more inclusive and support broader patient participation. Sarah Kulwicki, of Eli Lilly and Company, shared strategies that trial sponsors are utilizing to increase accessibility for patients, included limiting the number of on-site visits that are required, leveraging telehealth visits, partnering with local providers for visits, prepaying for transportation costs, and connecting patients to patient navigators to address needs and associated costs of participation. Panelists also acknowledged the importance of cultural competency for providers; moreover, clinical trial informational materials must also reflect the cultural and linguistic needs of the patients in order to successfully engage participants.

Additional strategies to bolster the oncology workforce and support quality patient care included co-location of providers, training, peer mentoring, and community partnerships. Panelists also noted that establishing a primary care provider practice within a cancer center can facilitate partnership in managing patients across providers and at care transition. They also stated that providing education in oncology and in managing long-term cancer survivors to trainees in family practice and internal medicine programs will enhance the future workforce and support long-term patient care. Panelists explained that telementoring programs can connect expertise at universities with providers in community settings to offer mentorship and resources so that these providers feel supported in caring for their patients. The panelists also emphasized that partnering with trusted advocacy groups, community organizations, and faith-based centers in communities will enhance cancer screening and care education or services for patients.

The importance of building trust was a key theme throughout the discussion, acknowledged by the panelists as being foundational to the health care experience and the success of the innovations shared. The panelists highlighted the importance of building trust between the patient and provider, as well as between the academic center and community providers. When building trust and partnerships with providers, the panelists emphasized the importance of taking an “all teach, all learn” approach to encourage bidirectional communication and learning. With respect to building trust in the community, Keith Argenbright, MD, of UT Southwestern Harold C. Simmons Comprehensive Cancer Center, and Director of Moncrief Cancer Institute, stated, “Once you’re able to get in there, you just must do what you say you’re going to do, and you have to do it over and over again, and you have to do it in a way that is respectful to the patient. We must get it right every single time because once we get it wrong, then that person tells a lot of other people.”

Conclusions

The NCCN Policy Summit: Cancer Across Geography explored care imbalances across geography. The summit revealed innovative approaches and emerging best practices that can be replicated to bridge gaps in prevention and care. Technology expansion (ie, rural broadband), enhanced access to transportation, expanded workforce incentives, and comprehensive screening for health-related social needs, if brought to scale, could help reduce inequitable outcomes across geography.

Panelists emphasized the importance of leveraging and expanding upon community resources. Expanding access to common cancer screenings through mobile lung and mammography clinics, educational outreach, and other inventive approaches is another promising practice. Where you live should not determine whether you live. Multidisciplinary stakeholders, including patients, caregivers, patient advocates, primary and oncology care professionals, community-based organizations, industry, researchers, and policymakers, must work together to bring these promising practices to scale through policy and practice transformation.