Health ownership in American indigenous communities

BackgroundViolence is a serious public health concern disproportionately experienced by American Indian and Alaska Native (AIAN) people. While the burden and impact of violence may be explained by the presence of risk factors among this group, AIAN communities benefit from unique protective factors and universal strategies which may be tailored with tribal adaptations. We sought to identify and explore violence prevention strategies specific to AIAN populations.MethodsA review was conducted to systematically identify violence prevention programs, policies, and practices implemented in AIAN communities. We searched nine electronic databases and relevant gray literature released between January 1980 and June 2018. We included intervention-focused records targeting at least one violence topic area (child abuse/neglect, elder abuse, intimate partner violence, sexual violence, youth violence, and suicide) in a majority (> 50%) AIAN population.ResultsA total of 5220 non-duplicate records were screened, yielding 318 full-text records. After applying exclusion criteria, 57 records describing 60 program, policy, or practice implementations of 43 unique interventions were identified. All six violence types were represented, although more than half (58%; n = 25/43) focused on suicide prevention. Among suicide prevention programs, the most common strategies were identifying and supporting people at risk (80%; n = 20), teaching coping and problem-solving skills (56%; n = 14), and promoting connectedness (48%; n = 12). Two-thirds of the implementations (67%; n = 40/60) were in fully (100%) AIAN communities. Programs were implemented across many settings, though schools were the most common (35%, n = 21/60) setting. Of the 60 total implementations, a majority (80%; n = 48) were new approaches developed by and for AIAN communities, while the remainder were AIAN adaptations of programs previously created for non-AIAN populations. Most implementations (60%; n = 36/60) provided some evaluation data although less than half (45%; n = 27/60) reported evaluation results.ConclusionsThis review identified many violence prevention strategies specific to AIAN populations. While programs developed in one tribe may not be completely generalizable to others, shared tribal risk and protective factors suggest programs could be successful across diverse communities. Findings indicate there is a need to develop and evaluate violence prevention programs, policies and practices for AIAN populations.

The Center of American Indian and Minority Health (CAIMH), housed in the University of Minnesota Duluth Medical School, aims to reduce American Indian and Alaska Native (AIAN) health disparities by increasing the numbers of AIAN physicians, increasing awareness of AIAN healthcare, and conducting AIAN health related research. For the past 50 years CAIMH has held a summer enrichment program, Native Americans Into Medicine (NAM), with the goal of increasing the numbers of AIAN students successfully matriculating to and graduating from health professions programs. Until 2018, the program focused on improving math and science aptitude. In 2018, CAIMH significantly changed the NAM curriculum, focusing instead on research training, specifically Indigenous informed research conducted with and for AIAN communities. The curriculum and overall program changes were in response to persistent AIAN health disparities, minimal research available on AIAN health disparities, and low AIAN representation in nearly all health professions including medical research. By providing research training, CAIMH improves AIAN students' science and math (statistics) aptitude as before, but now also gives them skills that enhance their standing as applicants to health professions programs and that they can use in their future careers. The training also benefits AIAN communities by increasing the numbers of Tribal members aware of standards of research in Indigenous communities. The NAM curriculum highlights research best practices when working with AIAN communities.

American Indian and Alaska Native (AIAN) populations are frequently associated with the highest rates of tuberculosis (TB) disease of any racial/ethnic group in the USA. We systematically investigated variation in patterns and potential drivers of TB epidemiology among geographically distinct AIAN subgroups. Using data reported to the National Tuberculosis Surveillance System during 2010-2020, we applied a geographic method of data disaggregation to compare annual TB incidence and the frequency of TB patient characteristics among AIAN persons in Alaska with AIAN persons in other states. We used US Census data to compare the prevalence of substandard housing conditions in AIAN communities in these two geographic areas. The average annual age-adjusted TB incidence among AIAN persons in Alaska was 21 times higher than among AIAN persons in other states. Compared to AIAN TB patients in other states, AIAN TB patients in Alaska were associated with significantly higher frequencies of multiple epidemiologic TB risk factors (e.g., attribution of TB disease to recent transmission, previous diagnosis of TB disease) and significantly lower frequencies of multiple clinical risk factors for TB disease (e.g., diagnosis with diabetes mellitus, end-stage renal disease). Occupied housing units in AIAN communities in Alaska were associated with significantly higher frequencies of multiple measures of substandard housing conditions compared to AIAN communities in other states. Observed differences in patient characteristics and substandard housing conditions are consistent with contrasting syndromes of TB epidemiology in geographically distinct AIAN subgroups and suggest ways that associated public health interventions could be tailored to improve efficacy.

Community-based participatory research is a particularly powerful approach to research with American Indian and Alaska Native (AIAN) communities who have been subject to a history of mistreatment and unethical research. In person meetings, discussion, and engagement with tribal members and the community have become an essential component of community-based participatory research in AIAN communities. With the advent of the coronavirus disease 2019 pandemic, AIAN communities have moved to close or sharply curtail in-person activities, precluding in-person research methods. Current best practices for research with AIAN communities assumes in-person engagement; little guidance exists on engaging AIAN communities in research using virtual technologies. Our study, Native Women, Young, Strong, Empowered Changing High-risk alcohOl use and Increasing Contraception Effectiveness Study (Native WYSE CHOICES), was intentionally designed before the pandemic to be virtual, including recruitment, enrollment, intervention, and assessment with urban AIAN young women. We present our perspectives on virtual research with AIAN communities, including the critical role of our advisory partners to inform the virtual intervention design and recruitment methods in the formative stages of our project. Experiential reflection among research team and community partners. Virtual technologies, such as videoconferencing, social media, and mobile health apps, offer many tools to reach communities, especially in a pandemic. The virtualization of research with AIAN communities requires a significant investment in time, resources and planning to mitigate disadvantages; it cannot fully replace in-person-based community-based participatory research approaches, but may offer many strengths and unique advantages for research, especially in a pandemic.

Background: Qualitative and quantitative data and participatory research approaches might be most valid and effective for assessing substance use/abuse and related trends in American Indian and Alaska Native (AIAN) communities. Method: Twenty-nine federally recognized AIAN tribes in Washington (WA) State were invited to participate in Health Directors (HD) interviews and State treatment admissions data analyses. Ten Tribal HD (or designees) from across WA participated in 30–60-minute qualitative interviews. State treatment admissions data from 2002 to 2008 were analyzed for those who identified with one of 11 participating AIAN communities to explore admission rates by primary drug compared to non-AIANs. Those who entered treatment and belonged to one of the 11 participating tribes (n = 4851) represented 16% of admissions for those who reported a tribal affiliation. Results: Interviewees reported that prescription drugs, alcohol, and marijuana are primary community concerns, each presenting similar and distinct challenges. Additionally, community health is tied to access to resources, services, and culturally appropriate and effective interventions. Treatment data results were consistent with interviewee-reported substance use/abuse trends, with alcohol as the primary drug for 56% of AIAN adults compared to 46% of non-AIAN, and other opiates as second most common for AIAN adults in 2008 with 15% of admissions. Limitations: Findings are limited to those tribal communities/community members who agreed to participate. Conclusion: Analyses suggest that some diverse AIAN communities in WA State share similar substance use/abuse, treatment, and recovery trends and continuing needs. Scientific Significance: Appropriate and effective research with AIAN communities requires respectful and flexible approaches.

Background: American Indian and Alaska Native (AIAN) populations face disproportionately high rates of HPV-related cancers and mortality, with the lowest HPV vaccination coverage (≥1 dose) among adolescents of all racial-ethnic groups. Barriers include vaccine misinformation, mistrust in healthcare systems, and a lack of culturally relevant communication. Few interventions have addressed these issues using community-engaged, multilevel strategies in primary care. This study explored provider-level barriers within a Tribal Health Program (THP) operating nine clinics in Southern California to inform a culturally grounded, narrative-based intervention to improve HPV vaccine uptake among AIAN adolescents. Methods: This community-based participatory research (CBPR) pilot used qualitative methods to assess provider perspectives in partnership with Tribal Health Program (THP) leadership and guided by a Community Advisory Board (CAB) of AIAN parents, community members, and clinic staff. CAB members helped shape study goals, co-develop interview guides, and advise on recruitment and culturally appropriate implementation. Tribal leadership supported planning and implementation to ensure smooth provider engagement. Twelve virtual interviews were conducted with THP providers and staff. Interviews were recorded, transcribed, and analyzed in Atlas.ti using team-based coding and intercoder agreement to identify culturally relevant themes. Results: The 12 providers and staff participants included medical assistants, pediatric nurse practitioners, and a pediatrician working across several THP clinics. Findings highlighted key challenges, including limited provider training on culturally appropriate communication, uncertainty about how to address HPV vaccine misinformation, and difficulty navigating sensitive topics such as the association of the vaccine with sexual activity. Participants stressed the importance of culturally grounded materials and communication strategies that center cancer prevention. As part of the CBPR process, findings from the provider interviews will be shared with the CAB and Tribal health leadership to validate interpretations, ensure cultural relevance, and inform next steps for intervention development. Conclusions: This pilot study demonstrates the importance of integrating clinic voices through CBPR to inform HPV vaccine uptake strategies in AIAN communities. Engaging Tribal leadership and a CAB reflects both community priorities and systems-level support. Findings will guide the development of a multilevel clinic-based intervention that incorporates narrative messages, provider communication training, and educational materials grounded in AIAN cultural values. This work will inform a future NIH grant proposal and contribute to efforts to reduce HPV-related cancer disparities in AIAN communities through culturally centered, equity-driven implementation science. Citation Format: Claradina Soto, Morgan Gill, Jennifer Tsui. Identifying HPV vaccination barriers in tribal healthcare settings: A community-partnered qualitative study among providers serving American Indian and Alaska Native families [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B066.

Children are highly regarded and treasured as the future of American Indian and Alaska Native (AIAN) communities. Developmental disorders, however, are more frequently undiagnosed and untreated in AIAN children compared to others in the United States. Developmental screening can help communities ensure that their children reach their full potential, but lack of culturally sensitive and valid screening measures complicates screening among AIAN children. This can, in turn, delay access to early intervention and undermine the ability of AIAN communities to support children's optimal development. This study explored families' and professionals' perceptions of screening systems and processes in AIAN communities and to identify gaps and opportunities. A total of 53 interviews and 23 focus groups were conducted with 157 parents and early childcare professionals in four AIAN communities. A conceptual framework to describe systems of screening for young children was developed by AIAN early childhood program partners and early childhood researchers working together on a Tribal Early Childhood Research Center Community of Learning; this framework guided study design and interview guides. Transcripts were coded for themes in alignment with the conceptual framework; 13 key themes and 81 subthemes were identified. Findings are discussed in terms of implications for enhancing screening efforts in Tribal communities.

ABSTRACTThe primary aim of this study was to develop an American Indian and Alaska Native (AIAN) tailored research with human subjects curriculum that would increase the participation of AIAN members in research affecting their communities. We used a community-engaged research approach to co-design and evaluate a culturally tailored online human subjects curriculum among a national sample of AIAN community members (n = 244) with a standard nationally used online curriculum (n = 246). We evaluated pre- and post-test measures to assess group differences in ethics knowledge, perceived self-efficacy to apply such knowledge to protocol review, and trust in research. Analysis of regional tribal differences assessed curriculum generalizability. Using an 80% correct item cut-off at first attempt as passing criterion, the tailored curriculum achieved a 59.3% passing rate versus 28.1% in the standard curriculum (p < .001). For both arms, participants reported a significant increase in trust in research and in research review efficacy. Participants took less time to complete the training and reported significantly higher acceptability, satisfaction, and understandability of the curriculum for the tailored curriculum. This culturally tailored research ethics curriculum has the potential to increase participation in AIAN communities in research affecting tribal members. The AIAN curriculum achieved significantly higher levels of participants’ research ethics knowledge, self-efficacy in reviewing research protocols, trust in research, and completion of the training requirements. Culturally grounded training curricula may help remedy the impact of historical research ethics abuses involving AIAN communities that have contributed to mistrust of research and lack of community engagement in research.

2 University of Oklahoma College of Medicine/ Troy and Dolly Smith Cancer Center, Integris Baptist Medical Center, Oklahoma City, Oklahoma. A Brief History of Cancer Data in American Indians and Alaska Natives The risk for cancer has increased for American Indian and Alaska Native (AI/AN) populations since the beginning of the 20th century. This population is smaller in size and is younger than other racial/ ethnic groups, having survived the extermination policy of the US government in the 19th century and the decimation of the indigenous population by disease brought by the Europeans. Cancer statistics have not been easily obtained, nor accurate, for this special population. Tribal recognition, self-identification, and sporadic data collection concerning AI/AN populations have been fragmented. Only recently have improved data been prioritized by state health departments and hospital and central cancer registries.

Addressing disparities in the health of American Indian and Alaska Native people: the importance of improved public health data.

Identifying health status and disparities for Indigenous populations is the first logical step toward better health. We compare the mortality profile of the American Indian and Alaska Native (AI/AN) population with that of non-Hispanic whites in the Haudenosaunee Nations in New York State, the Indian Health Service (IHS) East region (Nashville Area) and the United States. Data from the linkage of IHS registration records with decedents from the National Death Index (1990-2009) were used to identify AI/AN deaths misclassified as non-AI/AN. Analyses were limited to persons of non-Hispanic origin. We analyzed trends for 1990-2009 and compared AI/AN and white persons in the Haudenosaunee Nations in New York State, IHS East region and the United States. All-cause death rates over the past two decades for Haudenosaunee men declined at a greater percentage per year than for AI/AN men in the East region and United States. This decrease was not observed for Haudenosaunee women with all-cause death rates appearing to be stable over the past two decades. Haudenosaunee all-cause death rates were 16% greater than that for whites in the Haudenosaunee Nations. The most prominent disparities between Haudenosaunee and whites are concentrated in the 25-44 year age group (Risk Ratio=1.85). Chronic liver disease, diabetes, unintentional injury, and kidney disease death rates were higher in Haudenosaunee than in whites in the Haudenosaunee Nations. The Haudenosaunee cancer death rate (180.8 per 100,000) was higher than that reported for AI/AN in the East (161.5 per 100,000).Haudenosaunee experienced higher rates for the majority of the leading causes of death than East AI/AN. These results highlight the importance of Haudenosaunee-specific data to target prevention efforts to address health disparities and inequalities in health.

American Indians and Alaska Natives (AI/AN) are the Indigenous peoples of the United States. According to the U.S. Census Bureau, approximately 9.7 million people self-identified as AI/AN (alone or in combination with other races), representing 2.9% of the total U.S. population. These people represent diverse groups of discrete Tribes, each with their language, culture, and geographic home. As part of the conquest and settlement of North America, some Indigenous peoples signed treaties with the U.S. government, surrendering their lands in return for various government commitments, including health care. The Indian Health Service (IHS) was born out of these agreements. The IHS is an agency in the U.S. Department of Health and Human Services under the U.S. Public Health Service. The IHS provides a comprehensive health service delivery system for approximately 2.7 million AI/AN who belong to 574 federally recognized Tribes/nations in 37 states. The aim of this paper is to make recommendations regarding the initiation of sustainable neurology care in marginalized or underserved populations by reviewing 40 years of neurology care provision within the IHS. We will discuss (1) the IHS, (2) neurological care provided within the IHS, including midlevel provider extension of neurology care and traditional medical care, and (3) select neurological diagnoses within AI/AN populations. Marginalized populations, including those in the United States that are rural, remote, or low socioeconomic status, lack access to specialty neurology care. This includes many AI/AN. The IHS has developed novel solutions to promote specialty care, including neurology. Notably, initial IHS investments in full-time neurology providers have led to more robust neurology care, often receiving attention from university programs. This suggests that an initial investment in stable on-site full-time neurology services provides a path to potential sustainable care for marginalized populations.

The misclassification of race decreases the accuracy of cancer incidence data for American Indians and Alaska Natives (AI/ANs) in some central cancer registries. This article describes the data sources and methods that were used to address this misclassification and to produce the cancer statistics used by most of the articles in this supplement. Records from United States cancer registries were linked with Indian Health Service (IHS) records to identify AI/AN cases that were misclassified as non-AI/AN. Data were available from 47 registries that linked their data with IHS, met quality criteria, and agreed to participate. Analyses focused on cases among AI/AN residents in IHS Contract Health Service Delivery Area (CHSDA) counties in 33 states. Cancer incidence and stage data were compiled for non-Hispanic whites (NHWs) and AI/ANs across 6 IHS regions of the United States for 1999 through 2004. Misclassification of AI/AN race as nonnative in central cancer registries ranged from 85 individuals in Alaska (3.4%) to 5297 individuals in the Southern Plains (44.5%). Cancer incidence rates among AI/ANs for all cancers combined were lower than for NHWs, but incidence rates varied by geographic region for AI/ANs. Restricting the rate calculations to CHSDA counties generally resulted in higher rates than those obtained for all counties combined. The classification of race for AI/AN cases in cancer registries can be improved by linking records to the IHS and stratifying by CHSDA counties. Cancer in the AI/AN population is clarified further by describing incidence rates by geographic region. Improved cancer surveillance data for AI/AN communities should aid in the planning, implementation, and evaluation of more effective cancer control and should reduce health disparities in this population.

The authors compared estimates for cancer risk factors, use of cancer screening tests, health status indicators, and access to care for American Indians and Alaska Natives (AI/ANs) and non-Hispanic whites (NHWs) in the US and for AI/ANs in 6 Indian Health Service regions. Behavioral Risk Factor Surveillance System data were aggregated from the years 2000 through 2006 and were used to calculate weighted prevalence estimates by gender for key variables except demographic variables. Compared with NHWs, AI/ANs had lower prevalence estimates for income, educational attainment, insurance coverage, and access to personal healthcare providers. AI/ANs in Alaska and NHWs had similar estimates for diabetes (approximately 6%); however, the prevalence was nearly twice as high among AI/ANs in the other regions. The prevalence of obesity was higher for AI/ANs (29.6%) than for NHWs (20.9%). The prevalence of binge drinking was higher among AI/AN males (24.9%) than among AI/AN females (8.5%). Heavy drinking was more prevalent among NHW females (5.3%) than among AI/AN females (3.5%). AI/ANs were more likely to be current smokers (31.1%) than NHWs (22.8%). The prevalence of AI/ANs who never smoked ranged from 31.5% in Alaska to 56.9% in the Southwest. In 5 of the 6 regions, AI/AN females had lower prevalence estimates of both Papanicolaou and mammography testing than NHW females. The use of colorectal cancer screening tests was more common among NHWs (53.8%) than among AI/ANs (44%). Although cancer health disparities persist among AI/ANs, the current analysis indicated that variation in the prevalence of their chronic disease risk factors may be obscured when national data are not examined by smaller geographic areas such as regions.

To conduct a systematic literature review to assess the conceptualization, application, and measurement of resilience in American Indian and Alaska Native (AIAN) health promotion. We searched 9 literature databases to document how resilience is discussed, fostered, and evaluated in studies of AIAN health promotion in the United States. The article had to (1) be in English; (2) peer reviewed, published from January 1, 1980, to July 31, 2015; (3) identify the target population as predominantly AIANs in the United States; (4) describe a nonclinical intervention or original research that identified resilience as an outcome or resource; and (5) discuss resilience as related to cultural, social, and/or collective strengths. Sixty full texts were retrieved and assessed for inclusion by 3 reviewers. Data were extracted by 2 reviewers and verified for relevance to inclusion criteria by the third reviewer. Attributes of resilience that appeared repeatedly in the literature were identified. Findings were categorized across the lifespan (age group of participants), divided by attributes, and further defined by specific domains within each attribute. Nine articles (8 studies) met the criteria. Currently, resilience research in AIAN populations is limited to the identification of attributes and pilot interventions focused on individual resilience. Resilience models are not used to guide health promotion programming; collective resilience is not explored. Attributes of AIAN resilience should be considered in the development of health interventions. Attention to collective resilience is recommended to leverage existing assets in AIAN communities.