Health disparities are differences in the incidence, prevalence, mortality, and burden of cancer and related adverse health conditions that exist among specific population groups. These population groups may be characterized by gender, age, race, ethnicity, education, income, social class, disability, geographic location, or sexual orientation.
The broad area of heath equity and disparities has benefitted significantly from transdisciplinary research teams in delineating the factors that contribute and exacerbate these inequities. Health equity is the attainment of the highest level of health for all people (https://www.healthypeople.gov/2020/about/foundation-health-measures/Disparities). Health equity has two important strands: improving average health for all and addressing avoidable inequalities in health. Social determinants of health (SDOH) are mostly responsible for health inequities – the unfair and avoidable factors in health status seen within and between countries. SDOH can be understood as conditions in which people are born, grow, live, work, and age, including the health system. These circumstances are shaped by the distribution of money, power, and resources at global, national, and local levels, which are themselves influenced by policy choices. Since these factors are avoidable, they can be addressed through a complement of scientific activities that will reduce the burden of these factors and improve overall health.
Much of the research generally in the area of SDOH focuses on delineating differences among racial/ethnic groups and understanding the barriers in care for specific underserved populations; and the subsequent development of behavioral interventions for these groups. These have been partially successful but have not consistently sought to change the conditions in which people live, work, and play. Despite the growing evidence of the effects of SDOH on both short-term and long-term health outcomes, there is little emphasis on developing theory- and evidence-based multilevel and population (community) interventions that target both structural and individual factors. For these interventions to be effective, it necessitates the development of new measures on inequity and social environment; the adaptation of existing measures of SDOH; and a comprehensive understanding of the pathways by which the social context affects health.
While focusing on improving the health of the population, it is imperative that we also ensure that every sector of society benefits equally from the developments in health. In this regard, we need to encourage research in small populations that are largely excluded from clinical trials and interventions due to the limited size of these population (such as Asian Americans, Native Hawaiians and other Pacific Islanders, American Indians, Alaska Natives, lesbian/gay/bisexual/transgender individuals, and African American subpopulations). Focusing on research in these small populations and subpopulations requires improved methodologies and selection of an appropriate sample size that will allow for generalizations to the subpopulations across the U.S.
How can we develop models and tools for measuring the effects of social context (i.e., concept of place, built environment) on health among diverse populations?
How can we develop models to compare the effects of social context on health patterns and trends within various settings – including community and clinical settings? What are the common measures and how can there be greater interoperability?
How would real-time data and the changing technology be garnered to have greater impact on health promotion and disease prevention in low income and “hard-to-reach” populations?
How can we use existing tools more efficiently to build large data sets to understand population health changes in building programs for health promotion and disease prevention?
How does social context contribute to disparities in cancer incidence and mortality?
How can increased knowledge of the global cancer burden contribute to our understanding of cancer disparities in the United States?
What are the key factors (including psychological, social, environmental, and policy-level) influencing cancer prevention strategies? How can these multilevel interventions be sustainable in real-life context?
How can we design and implement culturally appropriate interventions among indigent and medically underserved populations (including cancer survivors) to improve the health and quality of life of these populations?
To what extent are clinical and community-based intervention programs designed to address cancer disparities informed by evidence from science, practice, and policy?
Small Population/Subpopulation Research
What statistical tools are needed to analyze this kind of data?
What aspects of the subpopulation research in one community allow for generalizations to other African American and Native Hawaiian and other Pacific Islander sub-populations?
Can evidence-based interventions from other large populations be adapted to smaller diverse populations? What are the factors that need to be considered when testing and implementing multilevel interventions? Is there sufficient statistical power to assess the effects of each level and tease them apart?
Given the diverse locations of the subpopulations, how can concept of place be incorporated in these studies? Can these differences in communities be explained by the social, environmental or ecological factors? How can we account for these factors in interventions?
Selected Government-Supported Publications
Canceled, due to COVID-19: April 16-17, 2020: Intervention Research to Improve Native American Health (IRINAH) Annual Meeting, NIH Main Campus (Natcher Building) in Bethesda, MD.
The goal of this meeting is to discuss what has been discovered and learned after 10 years of IRINAH, including successes, challenges, and ways culture is critical to intervention science for the improvement of American Indian, Alaska Native, and Native Hawaiian health.
May 27-28, 2020: Cancer Epidemiology in Hispanic Populations Workshop, in person at NCI Shady Grove in Rockville, MD, and available via WebEx. This NCI-sponsored workshop will consider the challenges, identify opportunities, and develop ideas for increasing Hispanic representation in cancer epidemiological studies.
August 3-4, 2020: Advancing Rural Cancer Prevention and Control in the Next Decade, Siteman Cancer Center, St. Louis, MO
- February 4, 2020: Cancer Surveillance and Access to Care in Rural America
- January 21, 2020: Examining Rural Cancer Prevention and Control Efforts from the National Advisory Committee on Rural Health and Human Services
- April 10, 2019: ASCO’s 2nd State of Cancer Care in America event, Closing the Rural Cancer Care Gap, National Press Club, Washington, DC. Event playback available at ASCO’s Facebook page
- May 30 – 31, 2018: Accelerating Rural Cancer Control Research, Natcher Conference Center, NIH Campus, Bethesda, MD
- Jan 18 – 19, 2018: Improving Health Research on Small Populations: A Workshop , National Academy of Sciences Building , Washington, DC
- August 30, 2017: Rural Cancer: Data, Disparities, and Determination
- May 4 – 5, 2017: Rural Cancer Control: Challenges and Opportunities
- November 10, 2016: National Meeting on Precision Medicine and Cancer in American Indian & Alaska Native Communities: A Dialogue on Cancer Research
- September 12 – 14, 2016: Conference on Geospatial Approaches to Cancer Control and Population
Dissemination of a Colorectal Cancer Screening Program Across American Indian Communities in the Southern Plains and Southwest United States
The Cancer Moonshot Blue Ribbon Panel Report, published in October 2016, identified clinical and research opportunities to expand use of proven cancer prevention and early detection strategies to improve patient outcomes and has recommended projects related to cancer genetic testing (Recommendation G).
Colorectal cancer (CRC) is the third most frequently diagnosed cancer and the second leading cause of cancer deaths in the general US population. Cancer screening programs are partly responsible for declining CRC incidence and mortality in the United States. Unfortunately, American Indians (AIs) have experienced either no change or an increase in CRC incidence and mortality, disproportionate diagnosis of late-stage disease, and poorer survival.
Low screening rates
Despite the effectiveness of CRC screening tests for average-risk adults, these tests are significantly under-utilized by AIs, especially compared to urban Hispanic whites, adjusting for socio-economic status and other factors. Nearly two-thirds (65%) of US adults are current with CRC screening per US Preventive Services Task Force (USPSTF) guidelines. However, based on the Indian Health Service (IHS) Government Performance and Results Act data, screening rates ranged from a low of 28.1% in the Phoenix Area to a high of 50.5% in the Oklahoma Area, and 35% in Tucson and 41.9% in the Albuquerque Area. Most Tribes possess remarkably few healthcare resources to address CRC screening disparities and face many issues that underscore the need to implement effective CRC screening interventions targeting AIs, while engaging them with culturally appropriate interventions.
Barriers to healthcare services
AI health care is significantly underfunded, with fragmented services where acute care needs take precedence over preventive health services. Likewise, many IHS facilities have insufficient staff and high provider turnover, which results in abbreviated patient-provider encounters and insufficient or disjointed communications. Other documented barriers to CRC screening among AIs include cost/insurance, fear, stigma, embarrassment, and transportation. These issues underscore the need to implement culturally appropriate and effective CRC screening interventions targeting AIs. There is little evidence of efficacious CRC screening interventions being disseminated or implemented among AI communities or through IHS- or tribally operated health care facilities.
As a parallel effort to the ACCSIS initiative, the “Dissemination of a Colorectal Cancer Screening Program Across American Indian Communities in the Southern Plains and Southwest United States” consortia was established to address the need for improved evidence-based CRC screening interventions in a critically underserved population. The long-term goal of this initiative is to enhance health equity and increase survival among AIs by improving care coordination for CRC.
The overall objective of the project is to leverage the tribes’ and researcher team’s previous successes with dissemination and implementation science to test the effectiveness of a comprehensive, multi-level, and multi-component intervention to facilitate and navigate average and high-risk AI men and women, aged 50-75 years, to obtain a CRC screening exam. Through supplements to Cancer Center, the University of Arizona, University of New Mexico and the University of Oklahoma had received funding for two years (FY2018, 2019) to build partnerships, obtain tribal and university IRB approvals, conduct mixed-method environmental scans, develop and implement navigator trainings, identify protocols to tailor/target intervention strategies, and pilot test preliminary interventions for increasing screening in each of the primary study sites. In the forthcoming three years, the three sites propose to implement full-scale, multi-level and multi-component strategies to test effectiveness of the intervention.
University of Arizona Cancer Center:
University of New Mexico Comprehensive Cancer Center:
Stephenson Cancer Center at University of Oklahoma: