FormalPara Key Points

  • Accurate statistical data are necessary to develop and sustain culturally appropriate American Indian/Alaska Native (AI/AN) cancer programs that address the full cancer continuum.

  • Due to cultural and statistically significant geographical variation in cancer incidence, mortality, and survival, AI/AN healthcare data cannot be aggregated.

  • Early detection and screening support needs to expand to all AI/AN communities, inclusive of all types of screenable cancers. Partnerships are essential for long-term, proactive, and productive community-based programs and research.

  • A new generation of AI/AN medical and public health professionals are leading research into cancer and cancer care among AI/AN people.

This chapter is dedicated to James W Hampton, MD (Chickasaw and Choctaw Nation) (September 15, 1931–October 1, 2022), the first American Indian medical oncologist in the USA.

The purposes of this chapter are to (1) briefly explain the transition from having no useable American Indian/Alaska Native (AI/AN) data (in the late 1980s) to NUKA, a successful, culturally based healthcare system in Alaska (1996), and (2) highlight efforts to increase the number of Indigenous professionals in the public health and medical fields.

Accurate Indigenous Statistics Are Necessary for Effective Programs to Evolve

In the 1950s, Dr. James Hampton raised the issue of inaccurate and under-reported AI/AN health data. However, it was not until 1980 that the US Congress Office of Technology Assessment released Indian Health Care [1], which reported the poor health of AI/AN populations. Congress directed federal agencies, including the Indian Health Service (IHS), Centers for Disease Control and Prevention (CDC), and National Institutes of Health (NIH), to address these reported substandard levels of health.

Insufficient and lack of AI/AN cancer data were raised as issues that contributed to substandard levels of health. To address data issues, in the late 1980s AI/AN health and cancer professionals, IHS, National Cancer Institute (NCI), and Tribal and urban Indian health program experts convened and discussed the dearth of and/or inaccuracies in AI/AN data that contributed to widespread misinformation and lack of Indigenous cancer care programs. In 1989, Dr. Ken Chu of the NCI Special Populations Studies Branch delineated and released AI/AN cancer mortality data (the first time AI/ANs were separated from the “other” group that combined all smaller populations). In the same year, the NCI established the Network for Cancer Control Research among American Indian and Alaska Native Populations, comprising 18 individuals from diverse regions. Among the key outcomes of this Network was the 1992 National Strategic Plan for Cancer Prevention and Control to Benefit the Overall Health of American Indians and Alaska Natives [2]. Two recommendations and associated outcomes from this Strategic Plan report follow [2, Ch. 12, p. 15]:

Recommendation A. … the underreported mortality from cancer and other inaccurate cancer data on American Indians and Alaska Natives be recognized by federal agencies. The process of data collection should be corrected to prevent misleading conclusions.

Outcomes: (1) Federal agencies will contract with an unbiased independent agency to assess the magnitude of racial misclassification in all federal databases …. (2) Federal agencies will organize training workshops for professionals and organizations involved with collecting cancer statistics.

Recommendation B. … the overall quality of cancer data be objectively scrutinized and improved. The process of collecting American Indian and Alaska Native cancer statistics should be reviewed to reduce racial misclassification, diagnostic, and/or other errors.

Outcomes: Federal agencies will develop an initiative to improve the cancer database by training tumor registrars/medical records staff …. To improve the reporting of cancer staging, federal agencies will encourage hospitals … to develop American College of Surgeons-approved cancer programs.

The strategic plan helped raise awareness about data insufficiencies affecting AI/ANs, programs, resources, and research. In 1993, the NCI Surveillance, Epidemiology, and End Results (SEER) and the CDC began to recognize the existence of statistically significant geographic differences among Tribal Nations. SEER leadership (Drs. Brenda Edwards and Judith Swan) allocated resources to improve racial misclassification of data and to support biannual meetings of the network (1996–2003). The CDC, NCI, IHS, National Cancer Registries, and others collaborated to improve AI/AN data collection and reporting. Currently, the CDC supports interactive websites that tailor AI/AN data to the user’s needs.

These major improvements mean that most states now have databases linked with the IHS. However, some states with significant AI/AN populations have yet to create these links. Overall, state and local cancer data continue to be under-reported and inaccurate, and improvements are needed. In addition, with greater understanding has come the realization that different questions need to be asked, for example: why do some AI/AN cancer patients experience severe side effects leading to their withdrawal from cancer clinical trials, and are there unique genetic markers affecting AI/AN populations? Longitudinal tracking of AI/AN cancer survivors is required to understand the excessive chronic/long-term and late effects of cancer and/or cancer treatments among these populations [3,4,5,6,7]. In addition, data are almost entirely lacking on cancer diagnosis for AI/AN children, adolescents, and young adults. These data gaps need to be addressed so that research, support services, and interventions can be identified.

NUKA: A Model of Culturally and Medically Effective Indigenous Healthcare

The NUKA System of Care is an excellent model of care, relevant for selected regions of Indian Country [8]. Southcentral Foundation in Alaska created this relationship-based, customer-owned approach to transforming healthcare, improving outcomes, and reducing costs. Under this model, Alaska Natives are “customers” and “owners” and not patients; the 12 Alaska Native corporations are at the will of the people whose healthcare needs they serve. In contrast, most US healthcare is based around insurance payments, rather than patient needs. NUKA emphasizes being culturally respectful and finding ways by which the culture can support health, and preventative health in particular. Rather than repeatedly highlighting negative issues in Indigenous cultures, NUKA builds on Alaska Native strengths and responds to the wants and needs of customers and owners. This contrasts to a government approach that assumes it knows best what AI/AN people need or want. NUKA has made significant changes, including in palliative care, and it has improved patient outcomes. NUKA has evolved through grant support, including from the Robert Wood Johnson Foundation in 2020, illustrating the role of research and funding as Tribes seek resources to support their desire for improved cancer and healthcare outcomes. In the case of NUKA, customers/owners direct when, where, and how care systems function, leading to improved patterns of care and increased patient and staff satisfaction.

IHS, Tribal, and Urban Indian Partnerships

Partnerships exist between Tribes, urban Indian clinics, research institutions, and academic institutions. These partnerships must be honest and equal if significant improvements are to occur. For example, the partnership between Judith Salmon Kaur, MD (Choctaw), and Marilyn Roubidoux, MD (Iowa Tribe of Kansas and Nebraska), began in 1995 when the two met at an Association of American Indian Physicians (AAIP) meeting, at which Dr. Kaur spoke about her attempts to address cervical and breast cancers among AI/AN women. Later, Dr. Roubidoux approached Dr. Kaur and suggested that, given the shortage of Native patients at the University of Michigan where Dr. Roubidoux worked, the two should work together to improve mammography services. This led to a 40-year partnership.

The New Generation of AI/AN Researchers

There currently are several Native leaders engaged in academic research (Fig. 15.1), including:

  • Donald Warne, MD, MPH (Oglala Lakota tribe from Pine Ridge, South Dakota), co-director of the Center for Indigenous Health and full professor and Provost Fellow for Indigenous Health Policy at Johns Hopkins University.Footnote 1

  • Rodney C. Haring, PhD, MSW (Seneca Nation), Associate Professor of Oncology at the Office of Community Outreach and Engagement, Department of Cancer Prevention & Control, and Director at the Center for Indigenous Cancer Research at the Roswell Cancer Center.Footnote 2

  • Francine C. Gachupin, PhD, MPH (Pueblo of Jemez), co-director of Native American Cancer Prevention, University of Arizona.Footnote 3

  • Jani Ingram, PhD (Navajo), co-director of Native American Cancer Prevention, Northern Arizona University.Footnote 4

Fig. 15.1
Five photos of Donald Warne, Rodney C. Haring, Francine C. Gachupin, Jani Ingram and Dorothy Rhoades, respectively, along with brief bios.

Five Native American faculty and researchers: (from left) Donald Warne, Rodney Haring, Francine Gachupin, Jani Ingram, and Dorothy Rhoades. (Photos provided by each researcher)

Full size image

Investments in the next generation of AI/AN researchers will lead to many more similar positions, creating opportunities for Indigenous-led community cancer intervention partnerships.

Other program leaders, such as Dorothy Rhoades, MD, MPH (Kiowa Nation), at the Oklahoma University College of Medicine and Stephenson Cancer CenterFootnote 5 have initiated patient navigation programs that have significantly increased the number of AI/ANs enrolled in cancer clinical trials, with health, wellness, and disease prevention programs spanning Alaska through to Florida.

The health of Indigenous people should be valued. Cross-cultural programs that include complementary and alternative medicine and programs based on the integral strengths of local Indigenous cultures will remain the most successful over the long term. At its annual conference, the Association of American Indian Physicians offers and leads cross-cultural workshops that encourage respect for traditional ways of healing. It also sponsors intermittent spiritual events to assist emerging American Indian physicians. Similarly, the National Alaska Native American Indian Nurses Association and the American Indian, Alaska Native, and Native Hawaiian Caucus of the American Public Health Association provide mentoring to new and emerging healthcare professionals and public health students.

Under the auspices of the Center to Reduce Cancer Health Disparities program of the NCI, Mayo Clinic’s Spirit of EAGLES program initiated the Hampton Faculty Fellows, a mentorship program to train and promote the career development of qualified health disparities researchers. Hampton Faculty Fellows were chosen competitively from 2010 to 2015. This national program brought together researchers from various academic and clinical practices to increase research capacity through one-on-one mentoring, course training, and the development of research collaborations with and for native communities. Given this cadre of scholars, many communities can now confidently design and participate in ethical research. AI/AN communities increasingly see the value of research and no longer need to mistrust the intentions or motives or researchers.