Good Health and Wellness: Measuring Impact Through an Indigenous Lens.

In 2014, the Centers for Disease Control and Prevention (CDC) commissioned the Urban Indian Health Institute (UIHI) to coordinate a multifaceted national evaluation plan for Good Health and Wellness in Indian Country (GHWIC), CDC's largest investment in chronic disease prevention for American Indians and Alaska Natives (AI/ANs). GHWIC is a collaborative agreement among UIHI, CDC, tribal organizations, and individual tribes. In collaboration, UIHI and CDC drew upon an indigenous framework, prioritizing strength-based approaches for documenting program activities, to develop a 3-tiered evaluation model. The model incorporated locally tailored metrics, adherence to tribal protocols, and cultural priorities. Ultimately, federal requirements and data collection processes were aligned with tribal strengths and bidirectional learning was promoted. We describe how UIHI worked with tribal recipients, tribal health organizations, Tribal Epidemiology Centers, and CDC to develop and implement the model on the basis of an indigenous framework of mutual trust and respect.

A Forgotten Danger: Burden of Influenza Mortality Among American Indians and Alaska Natives, 1999-2016.

American Indians and Alaska Natives (AI/ANs) are the only racial group in the United States that is identified as having a higher risk for developing influenza-related complications. As such, influenza-related mortality has consistently been one of the leading causes of death among AI/ANs. In addition, estimating influenza-related mortality is hampered by significant degrees of racial misclassification and underreporting of both morbidity and mortality data in the AI/AN population. Using data available from the Centers for Disease Control and Prevention, we analyzed influenza mortality by geography, race, gender, and age group to improve our understanding of the influenza burden on AI/AN communities. We found that while mortality rates generally declined across the AI/AN population, significant disparities exist between AI/ANs and non-Hispanic whites (NHWs). The greatest disparities occurred at the earliest stages of life, with mortality rates for AI/AN children younger than 5 years being more than 2 times higher than for NHW children. Similarly, the burden of influenza-related mortality among AI/AN adults emerged much earlier in life compared with NHWs. Perhaps most important, though, we found significant disparities in the geographic distribution of influenza-related mortality among AI/ANs. Because these are largely vaccine-preventable deaths, these results identify an area for targeted intervention to reduce the overall deaths attributable to influenza.

Responsible Research With Urban American Indians and Alaska Natives.

American Indian and Alaska Native (AI/AN) communities harbor understandable mistrust of research. Outside researchers have historically controlled processes, promulgating conclusions and recommended policies with virtually no input from the communities studied. Reservation-based communities can apply sovereignty rights conferred by the federal government to change this research trajectory. Many tribes now require review and approval before allowing research activities to occur, in part through the development of regulatory codes and oversight measures. Tribal oversight ensures that research is directed toward questions of importance to the community and that results are returned in ways that optimize problem solving. Unfortunately, tribal governance protections do not always extend to AI/ANs residing in urban environments. Although they represent the majority of AI/ANs, urban Indians face an ongoing struggle for visibility and access to health care. It is against this backdrop that urban Indians suffer disproportionate health problems. Improved efforts to ensure responsible research with urban Indian populations requires attention to community engagement, research oversight, and capacity building. We consider strategies to offset these limitations and develop a foundation for responsible research with urban Indians.

Community dissemination and genetic research: moving beyond results reporting.

The community-based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N = 60) and 6 (N = 61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they "could do something about" and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web-based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small-group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two-way dialogue, rather than a one-way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit.

Factors that influence mammography use among older American Indian and Alaska Native women.

INTRODUCTION: American Indian and Alaska Native (AIAN) women have relatively high breast cancer mortality rates despite the availability of free or low-cost screening. PURPOSE: This qualitative study explored issues that influence the participation of older AIAN women in mammography screening through tribally directed National Breast and Cervical Cancer Early Detection Programs (NBCCEDPs). METHODS: We interviewed staff (n = 12) representing five tribal NBCCEDPs and conducted four focus groups with AIAN women ages 50 to 80 years (n = 33). RESULTS: Our analysis identified four main areas of factors that predispose, enable, or reinforce decisions around mammography: financial issues and personal investments, program characteristics including direct services and education, access issues such as transportation, and comfort zone topics that include cultural or community-wide norms regarding cancer prevention. CONCLUSION: This study has implications for nurse education and training on delivering effective mammography services and preventive cancer outreach and education programs in AIAN communities.

Building partnerships in community-based participatory research: budgetary and other cost considerations.

Community-based participatory research (CBPR) is an important framework for partnering with communities to reduce health disparities. Working in partnership with community incurs additional costs, some that can be represented in a budget summary page and others that are tied to the competing demands placed on community and academic partners. These cost considerations can inform development of community-academic partnerships. We calculated costs from a case study based on an ongoing CBPR project involving a Community Planning Group (CPG) of community co-researchers in rural Alaska and a bicultural liaison group who help bridge communication between CPG and academic co-researchers. Budget considerations specific to CBPR include travel and other communication-related costs, compensation for community partners, and food served at meetings. We also identified sources of competing demands for community and academic partners. Our findings can inform budget discussions in community-academic partnerships. Discussions of competing demands on community partners' time can help plan timelines for CBPR projects. Our findings may also inform discussions about tenure and promotion policies that may represent barriers to participation in CBPR for academic researchers.

Launching native health leaders: reducing mistrust of research through student peer mentorship.

OBJECTIVES: We assessed the impact of Launching Native Health Leaders (LNHL), a peer-mentoring and networking program that introduced American Indian/Alaska Native (AI/AN) undergraduates to health and research careers and concepts of community-based participatory research (CBPR). METHODS: We conducted 15 interviews and 1 focus group with students who had attended 1 or more LNHL meetings, which took place during 9 professional health research conferences in 2006 to 2009. We completed data collection in 2010, within 1 to 4 years of LNHL participant engagement in program activities. RESULTS: Participants described identity and cultural challenges they encountered in academic institutions and how their views shifted from perceiving research as an enterprise conducted by community outsiders who were not to be trusted toward an understanding of CBPR as contributing to AI/AN health. CONCLUSIONS: LNHL provided a safe environment for AI/AN students to openly explore their place in the health and research arenas. Programs such as LNHL support AI/AN student development as leaders in building trust for academic-tribal partnerships.

Strategies and stakeholders: minority recruitment in cancer genetics research.

The Cancer Genetics Network (CGN) is one of a growing number of large-scale registries designed to facilitate investigation of genetic and environmental contributions to health and disease. Despite compelling scientific and social justice arguments that recommend diverse participation in biomedical research, members of ethnic minority groups continue to be chronically underrepresented in such projects. The CGN studies reported in this issue used strategies well documented to increase minority participation in research activities, including use of community-targeted materials, addressing community trust concerns, and the adoption of personalized and flexible research protocols. Here, we review the outcome of these efforts to increase minority recruitment to the CGN, and ask what lessons the findings suggest for future minority recruitment initiatives.

Differential association of SMC1alpha and SMC3 proteins with meiotic chromosomes in wild-type and SPO11-deficient male mice.

SMC proteins are components of cohesin complexes that function in chromosome cohesion. We determined that SMC1alpha and SMC3 localized to wild-type mouse meiotic chromosomes, but with distinct differences in their patterns. Anti-SMC3 coincided with axial elements of the synaptonemal complex, while SMC1alpha was observed mainly in regions where homologues were synapsed. This pattern was especially visible in pachytene sex vesicles where SMC1alpha localized only weakly to the asynapsed regions. At diplotene, SMC3, but not SMC1alpha, remained bound along axial elements of desynapsed chromosomes. SMC1alpha and SMC3 were also found to localize along meiotic chromosome cores of Spo11 null spermatocytes, in which double-strand break formation required for DNA recombination and homologous pairing were disrupted. In Spo11 -/- cells, SMC1alpha localization differed from SMC3 again, confirming that SMC1alpha is mainly associated with homologous or non-homologous synapsed regions, whereas SMC3 localized throughout the chromosomes. Our results suggest that the two cohesin proteins may not always be associated in a dimer and may function as separate complexes in mammalian meiosis, with SMC1alpha playing a more specific role in synapsis. In addition, our results indicate that cohesin cores can form independently of double-strand break formation and homologous pairing.