Cancer disparities among non-Hispanic urban American Indian and Alaska Native populations in the United States, 1999-2017.

BACKGROUND: Disparities in cancer incidence have not been described for urban American Indian/Alaska Native (AI/AN) populations. The purpose of the present study was to examine incidence rates (2008-2017) and trends (1999-2017) for leading cancers in urban non-Hispanic AI/AN (NH AI/AN) compared to non-Hispanic White (NHW) populations living in the same urban areas. METHODS: Incident cases from population-based cancer registries were linked with the Indian Health Service patient registration database for improved racial classification of NH AI/AN populations. This study was limited to counties in Urban Indian Health Organization service areas. Analyses were conducted by geographic region. Age-adjusted rates (per 100,000) and trends (joinpoint regression) were calculated for leading cancers. RESULTS: Rates of colorectal, liver, and kidney cancers were higher overall for urban NH AI/AN compared to urban NHW populations. By region, rates of these cancers were 10% to nearly 4 times higher in NH AI/AN compared to NHW populations. Rates for breast, prostate, and lung cancer were lower in urban NH AI/AN compared to urban NHW populations. Incidence rates for kidney, liver, pancreatic, and breast cancers increased from 2% to nearly 7% annually between 1999 to 2017 in urban NH AI/AN populations. CONCLUSIONS: This study presents cancer incidence rates and trends for the leading cancers among urban NH AI/AN compared to urban NHW populations for the first time, by region, in the United States. Elevated risk of certain cancers among urban NH AI/AN populations and widening cancer disparities highlight important health inequities and missed opportunities for cancer prevention in this population.

COVID-19 Among Non-Hispanic American Indian and Alaska Native People Residing in Urban Areas Before and After Vaccine Rollout-Selected States and Counties, United States, January 2020-October 2021.

Objectives. To evaluate COVID-19 disparities among non-Hispanic American Indian/Alaska Native (AI/AN) and non-Hispanic White persons in urban areas. Methods. Using COVID-19 case surveillance data, we calculated cumulative incidence rates and risk ratios (RRs) among non-Hispanic AI/AN and non-Hispanic White persons living in select urban counties in the United States by age and sex during January 22, 2020, to October 19, 2021. We separated cases into prevaccine (January 22, 2020-April 4, 2021) and postvaccine (April 5, 2021-October 19, 2021) periods. Results. Overall in urban areas, the COVID-19 age-adjusted rate among non-Hispanic AI/AN persons (n = 47 431) was 1.66 (95% confidence interval [CI] = 1.36, 2.01) times that of non-Hispanic White persons (n = 2 301 911). The COVID-19 prevaccine age-adjusted rate was higher (8227 per 100 000; 95% CI = 6283, 10 770) than was the postvaccine rate (3703 per 100 000; 95% CI = 3235, 4240) among non-Hispanic AI/AN compared with among non-Hispanic White persons (2819 per 100 000; 95% CI = 2527, 3144; RR = 1.31; 95% CI = 1.17, 1.48). Conclusions. This study highlights disparities in COVID-19 between non-Hispanic AI/AN and non-Hispanic White persons in urban areas. These findings suggest that COVID-19 vaccination and other public health efforts among urban AI/AN communities can reduce COVID-19 disparities in urban AI/AN populations. (Am J Public Health. 2022;112(10):1489-1497. https://doi.org/10.2105/AJPH.2022.306966).

COVID-19 Among American Indian and Alaska Native Persons - 23 States, January 31-July 3, 2020.

Although non-Hispanic American Indian and Alaska Native (AI/AN) persons account for 0.7% of the U.S. population,* a recent analysis reported that 1.3% of coronavirus disease 2019 (COVID-19) cases reported to CDC with known race and ethnicity were among AI/AN persons (1). To assess the impact of COVID-19 among the AI/AN population, reports of laboratory-confirmed COVID-19 cases during January 22†-July 3, 2020 were analyzed. The analysis was limited to 23 states§ with >70% complete race/ethnicity information and five or more laboratory-confirmed COVID-19 cases among both AI/AN persons (alone or in combination with other races and ethnicities) and non-Hispanic white (white) persons. Among 424,899 COVID-19 cases reported by these states, 340,059 (80%) had complete race/ethnicity information; among these 340,059 cases, 9,072 (2.7%) occurred among AI/AN persons, and 138,960 (40.9%) among white persons. Among 340,059 cases with complete patient race/ethnicity data, the cumulative incidence among AI/AN persons in these 23 states was 594 per 100,000 AI/AN population (95% confidence interval [CI] = 203-1,740), compared with 169 per 100,000 white population (95% CI = 137-209) (rate ratio [RR] = 3.5; 95% CI = 1.2-10.1). AI/AN persons with COVID-19 were younger (median age = 40 years; interquartile range [IQR] = 26-56 years) than were white persons (median age = 51 years; IQR = 32-67 years). More complete case report data and timely, culturally responsive, and evidence-based public health efforts that leverage the strengths of AI/AN communities are needed to decrease COVID-19 transmission and improve patient outcomes.

COVID-19 Mortality Among American Indian and Alaska Native Persons - 14 States, January-June 2020.

American Indian/Alaska Native (AI/AN) persons experienced disproportionate mortality during the 2009 influenza A(H1N1) pandemic (1,2). Concerns of a similar trend during the coronavirus disease 2019 (COVID-19) pandemic led to the formation of a workgroup* to assess the prevalence of COVID-19 deaths in the AI/AN population. As of December 2, 2020, CDC has reported 2,689 COVID-19-associated deaths among non-Hispanic AI/AN persons in the United States.† A recent analysis found that the cumulative incidence of laboratory-confirmed COVID-19 cases among AI/AN persons was 3.5 times that among White persons (3). Among 14 participating states, the age-adjusted AI/AN COVID-19 mortality rate (55.8 deaths per 100,000; 95% confidence interval [CI] = 52.5-59.3) was 1.8 (95% CI = 1.7-2.0) times that among White persons (30.3 deaths per 100,000; 95% CI = 29.9-30.7). Although COVID-19 mortality rates increased with age among both AI/AN and White persons, the disparity was largest among those aged 20-49 years. Among persons aged 20-29 years, 30-39 years, and 40-49 years, the COVID-19 mortality rates among AI/AN were 10.5, 11.6, and 8.2 times, respectively, those among White persons. Evidence that AI/AN communities might be at increased risk for COVID-19 illness and death demonstrates the importance of documenting and understanding the reasons for these disparities while developing collaborative approaches with federal, state, municipal, and tribal agencies to minimize the impact of COVID-19 on AI/AN communities. Together, public health partners can plan for medical countermeasures and prevention activities for AI/AN communities.

Health Disparities Research Among Small Tribal Populations: Describing Appropriate Criteria for Aggregating Tribal Health Data.

In response to community concerns, we used the Tribal Participatory Research framework in collaboration with 5 American-Indian communities in Washington, Idaho, and Montana to identify the appropriate criteria for aggregating health data on small tribes. Across tribal sites, 10 key informant interviews and 10 focus groups (n = 39) were conducted between July 2012 and April 2013. Using thematic analysis of focus group content, we identified 5 guiding criteria for aggregating tribal health data: geographic proximity, community type, environmental exposures, access to resources and services, and economic development. Preliminary findings were presented to focus group participants for validation at each site, and a culminating workshop with representatives from all 5 tribes verified our final results. Using this approach requires critical assessment of research questions and study designs by investigators and tribal leaders to determine when aggregation or stratification is appropriate and how to group data to yield robust results relevant to local concerns. At project inception, tribal leaders should be consulted regarding the validity of proposed groupings. After regular project updates, they should be consulted again to confirm that findings are appropriately contextualized for dissemination.

Understanding determinants of lung cancer preventive care in at-risk urban American Indians and Alaska Natives: A mixed-methods study.

Introduction: Lung cancer is the leading cause of cancer death among American Indian and Alaska Native (AI/AN) people, and AI/AN people have the highest rate of smoking of any racial or ethnic group in the US. There is limited research to inform culturally-relevant strategies for lung cancer prevention inclusive of lung cancer screening (LCS). The objective of this study was to understand determinants of LCS and tobacco cessation care in at-risk urban-dwelling AI/ANs. Materials and Methods: This was a mixed-methods community-based participatory research study including complimentary qualitative discussions and surveys conducted in Seattle, Washington, USA from 2022 to 2023. The study measures and analytic approach integrated the Consolidated Framework for Implementation Research and Tribal Critical Race Theory and qualitative transcripts were analyzed using thematic analysis. Participants were self-identified AI/AN people who were age ≥ 40 and had ≥ 10-year history of commercial cigarette smoking. Results: Forty-five participants completed surveys and participated in discussions, 48% were female, the median age was 58 and median smoking history was 24 pack-years of commercial cigarette use. Themes revealed prominent barriers to LCS care including access, costs, awareness, and fear. Many reported previous negative and discriminatory encounters within and outside the health system which may also serve as barriers. Most participants endorsed cancer screening and increased education, recommending Indigenous-centered, delivered, and tailored programs, as well barrier-directed support. Conclusions: In a broad sample of at-risk urban-dwelling AI/AN people, our findings suggest enthusiasm for preventive care but several complex barriers. Participants endorsed culturally-tailored programs which could provide relevant education and address barriers.

The rewarding recovery study: a randomized controlled trial of incentives for alcohol and drug abstinence with a rural American Indian community.

AIMS: To test if contingency management (CM) interventions for alcohol and drug abstinence were associated with increased alcohol and drug abstinence among American Indian adults with alcohol dependence who also use drugs. DESIGN: In this 2 × 2 factorial randomized controlled trial, American Indian adults with alcohol dependence who also used drugs were randomized to four conditions: (1) incentives for submission of urine samples only (control condition), (2) CM incentives for alcohol abstinence, (3) CM incentives for drug abstinence or (4) CM incentives for abstinence from both alcohol and drugs. SETTING: A Northern Plains Reservation in the United States. PARTICIPANTS: A total of 114 American Indian adults aged 35.8 years (standard deviation = 10.4); 49.1% were male. INTERVENTION AND COMPARATOR: Participants received incentives if they demonstrated abstinence from alcohol (CM for alcohol, n = 30), abstinence from their most frequently used drug (CM for drugs, n = 27) or abstinence from both alcohol and their most frequently used drug (CM for alcohol and drugs, n = 32) as assessed by urine tests. Controls (n = 25) received incentives for submitting urine samples only. MEASUREMENTS: Primary outcomes were urine ethyl glucuronide (alcohol) and drug tests conducted three times per week during the 12-week intervention period. Data analyses included listwise deletion and multiple imputation to account for missing data. FINDINGS: The three CM groups were significantly (P < 0.05) more likely to submit alcohol-abstinent urine samples compared with the control condition, with odds ratios ranging from 2.4 to 4.8. The CM for drugs (OR = 3.2) and CM for alcohol and drugs (OR = 2.5) were significantly more likely to submit urine samples that indicated drug abstinence, relative to the control condition (P < 0.05). However, these differences were not significant in multiple imputation analyses (P > 0.05). CONCLUSIONS: Contingency management (CM) incentives for abstinence were associated with increased alcohol abstinence in American Indian adults diagnosed with alcohol dependence who also used drugs, living on a rural reservation. The effect of CM incentives on drug abstinence was inconclusive.

Understanding Risk and Protective Factors Influencing Urban American Indian /Alaska Native Youth Graduation Expectations.

Utilizing data collected by the Monitoring the Future project between 2005-2015, this study assesses the effect of risk and protective factors in shaping the graduation expectations of urban American Indian/Alaska Native (AI/AN) students as compared to their non-Hispanic White (NHW) peers. The responses of nearly 150,000 8th- and 10th-grade students reveal that single race and multi-race AI/AN students experienced 13 of 15 risk factors at higher proportions than NHW students, and 12 of 15 risk factors corresponded to single race AI/AN students and a third of risk factors corresponded to multi-race AI/AN students having higher odds of expecting not to graduate. Additionally, for the majority of the 14 protective factors analyzed, both single race and multi-race AI/AN students showed lower odds of expecting to graduate compared to their NHW peers.

Promoting First Relationships®: Implementing a Home Visiting Research Program in Two American Indian Communities.

BACKGROUND: Few, if any, home visiting programs for children under the age of three have been culturally adapted for American Indian reservation settings. We recently adapted one such program: Promoting First Relationships®. OBJECTIVES: To culturally adapt Promoting First Relationships® while maintaining program fidelity, we used a community-based participatory approach to elicit input from two American Indian partners. METHODS: University-based researchers, reservation-based Native project staff, and Native tribal liaisons conducted collaborative meetings, conference calls, and focus groups to adapt Promoting First Relationships® to reflect local community needs and values. LESSONS LEARNED: Working closely with onsite Native project staff, being flexible and open to suggestions, and attending to the logistical needs of the community are imperative to developing and implementing adaptations. CONCLUSIONS: Several adaptations were made based on the collaboration between researchers and Native project staff. Collaboration is critical for adapting programs so they can be tested in ways that respect both American Indian culture and research needs.

Conversations about Community-Based Participatory Research and Trust: "We Are Explorers Together".

BACKGROUND: This paper describes a study circle and a series of conversations with a community partner that were part of a project that grew out of a partnership between Native People for Cancer Control, a research program at the University of Washington, and five tribes in Washington, Idaho, and Montana. METHODS: Researchers undertook a study circle to build bioethics capacity and, specifically, to better understand the values that should guide community-based participatory research (CBPR). RESULTS: Study circle members identified five action guiding principles for CBPR: respect tribal sovereignty, promote transparency, hear community priorities, learn from each other, and take collective action. This activity led to a series of conversations between researchers and the chair of Shoalwater Bay Tribe, Charlene Nelson. Nelson suggests the metaphor of "exploration" as a way to think about what good CBPR looks like. Exploration reframes the research enterprise, from a systematic scientific inquiry conducted by academic investigators to a less predictable activity that reaches into the uncontrolled and unknown. We used this metaphor to explore three features of CBPR we believe to be essential to building trust: ongoing commitment and time, direct collaboration with community members and new learning for all involved, and candid and cautious action. CONCLUSIONS: The CBPR literature underscores many of these same points; however, we found the metaphorical language offered by Nelson enriched their meaning and deepened study circle members' appreciation of them.

A culturally-tailored behavioral intervention trial for alcohol use disorders in three American Indian communities: Rationale, design, and methods.

BACKGROUND: Disproportionately high rates of alcohol use disorders are present in many American Indian/Alaska Native (AI/AN) communities, yet little information exists regarding the effectiveness of alcohol treatments in AI/AN populations. Contingency management is an intervention for illicit drug use in which tangible reinforcers (rewards) are provided when patients demonstrate abstinence as assessed by urine drug tests. Contingency management has not been widely studied as an intervention for alcohol problems because until recently, no alcohol biomarker has been available to adequately verify abstinence. AIMS: The HONOR Study is designed to determine whether a culturally-tailored contingency management intervention is an effective intervention for AI/AN adults who suffer from alcohol use disorders. METHODS: Participants include 400 AI/AN alcohol-dependent adults residing in one rural reservation, one urban community, as well as a third site to be decided, in the Western U.S. Participants complete a 4-week lead-in phase prior to randomization, then 12 weeks of either a contingency management intervention for alcohol abstinence, or a control condition where participants receive reinforcers for attending study visits regardless of alcohol use. Participants are then followed for 3-more months post-intervention. The primary study outcome is urinary ethyl glucuronide-confirmed alcohol abstinence; secondary outcomes include self-reported alcohol and drug use, HIV risk behaviors, and self-reported cigarette smoking. DISCUSSION: This will be the largest randomized, controlled trial of any alcohol for AI/ANs and the largest contingency management study targeting alcohol use disorders, thus providing important information to AI/AN communities and the alcohol treatment field in general.

Research START: A Multimethod Study of Barriers and Accelerators of Recruiting Research Participants.

Under-recruitment into clinical trials is a common and costly problem that undermines medical research. To better understand barriers to recruitment into clinical trials in our region, we conducted a multimethod descriptive study. We initially surveyed investigators who had conducted or were currently conducting studies that utilized an adult or pediatric clinical research center (n = 92). We then conducted focus groups and key informant interviews with investigators, coordinators, and other stakeholders in clinical and translational research (n = 32 individuals). Only 41% of respondents reported that they had or were successfully meeting recruitment goals and 24% of the closed studies actually met their targeted recruitment goals. Varied reasons were identified for poor recruitment but there was not a single investigator or study "phenotype" that predicted enrollment outcome. Investigators commonly recruited from their own practice or clinic, and 29% used a manual electronic medical record search. The majority of investigators would utilize a service that provides recruitment advice, including feasibility assessment and consultation, easier access to the electronic health record and assistance with institutional review board and other regulatory requirements. Our findings suggest potential benefits providing assistance across a range of services that can be individualized to the varied needs of clinical and translational investigators.

Developing Governance for Federated Community-based EHR Data Sharing.

Bi-directional translational pathways between scientific discoveries and primary care are crucial for improving individual patient care and population health. The Data QUEST pilot project is a program supporting data sharing amongst community based primary care practices and is built on a technical infrastructure to share electronic health record data. We developed a set of governance requirements from interviewing and collaborating with partner organizations. Recommendations from our partner organizations included: 1) partner organizations can physically terminate the link to the data sharing network and only approved data exits the local site; 2) partner organizations must approve or reject each query; 3) partner organizations and researchers must respect local processes, resource restrictions, and infrastructures; and 4) partner organizations can be seamlessly added and removed from any individual data sharing query or the entire network.

LC Data QUEST: A Technical Architecture for Community Federated Clinical Data Sharing.

The University of Washington Institute of Translational Health Sciences is engaged in a project, LC Data QUEST, building data sharing capacity in primary care practices serving rural and tribal populations in the Washington, Wyoming, Alaska, Montana, Idaho region to build research infrastructure. We report on the iterative process of developing the technical architecture for semantically aligning electronic health data in primary care settings across our pilot sites and tools that will facilitate linkages between the research and practice communities. Our architecture emphasizes sustainable technical solutions for addressing data extraction, alignment, quality, and metadata management. The architecture provides immediate benefits to participating partners via a clinical decision support tool and data querying functionality to support local quality improvement efforts. The FInDiT tool catalogues type, quantity, and quality of the data that are available across the LC Data QUEST data sharing architecture. These tools facilitate the bi-directional process of translational research.