Assessing Social Determinants of Health in a Prenatal and Perinatal Cultural Intervention for American Indians and Alaska Natives.

American Indians and Alaska Natives (AIANs) refer to cultural traditions and values to guide resilient and strength-based practices to address maternal and infant health disparities. METHODS: A case study of a culturally-based educational intervention on AIAN maternal and child health. RESULTS: Cultural teachings have successfully been applied in AIAN behavioral interventions using talking circles and cradleboards, but maternal and child health interventions are not well-represented in peer-reviewed literature. Zero publications included interventions centered around cradleboards and safe sleep. DISCUSSION: There is a need for rigorous published research on culturally based interventions and effectiveness on health outcomes for mothers and babies. CONCLUSIONS: This paper discusses how a cradleboard educational intervention incorporates national guidelines to address maternal and infant health while mediating social determinants of health.

Good Health and Wellness: Reflections on Implementing Health Promotion in Indian Country.

In 2014, the Centers for Disease Control and Prevention (CDC) launched "A Comprehensive Approach to Good Health and Wellness in Indian County" (GHWIC) to promote health and chronic disease prevention in tribal communities while facilitating cross-cultural learning and relationship-building. Through GHWIC, CDC aimed to work with American Indian and Alaska Native communities to identify effective health promotion strategies to address chronic disease disparities. Tribal sovereignty, community context, and consideration of tribal histories (e.g., oppression, genocide, and cultural erasure) are key to health improvement efforts and work with tribes. These elements center experience, knowledge, and self-determination to reclaim good health and wellness as Indigenous peoples see it. The Implementation Reflection Project was a qualitative inquiry composed of one-on-one discussions and small group sessions conducted to explore experiences of CDC staff, national partners, and tribal recipients as they implemented GHWIC program activities. The Project documented observations and recommendations for future tribal health funding efforts and identified best practices for effective partnerships with tribes and tribal organizations. Findings centered around tribal experiences with GHWIC, improved program processes, the importance of relationships, and the effects of internal capacity on implementation. Key suggestions for future work with tribal entities included simplifying and clarifying roles, expectations, and administration requirements, and establishing clear and consistent communication between program partners. The approach CDC used with GHWIC recipients was effective and respectful, but room for growth remains. Potential future collaborators in Indian Country should consider these findings when planning health promotion initiatives.

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.

Partnership with the Confederated Salish and Kootenai Tribes: Establishing an Advisory Committee for Pharmacogenetic Research.

BACKGROUND: Inclusion of American Indian and Alaska Native (AI/AN) populations in pharmacogenetic research is key if the benefits of pharmacogenetic testing are to reach these communities. Community-based participatory research (CBPR) offers a model to engage these communities in pharmacogenetics. OBJECTIVES: An academic-community partnership between the University of Montana (UM) and the Confederated Salish and Kootenai Tribes (CSKT) was established to engage the community as partners and advisors in pharmacogenetic research. METHODS: A community advisory committee, the Community Pharmacogenetics Advisory Council (CPAC), was established to ensure community involvement in the research process. To promote bidirectional learning, researchers gave workshops and presentations about pharmacogenetic research to increase research capacity and CPAC members trained researchers in cultural competencies. As part of our commitment to a sustainable relationship, we conducted a self-assessment of the partnership, which included surveys and interviews with CPAC members and researchers. RESULTS: Academic and community participants agree that the partnership has promoted a bidirectional exchange of knowledge. Interviews showed positive feedback from the perspectives of both the CPAC and researchers. CPAC members discussed their trust in and support of the partnership, as well as having learned more about research processes and pharmacogenetics. Researchers discussed their appreciation of CPAC involvement in the project and guidance the group provided in understanding the CSKT community and culture. DISCUSSION: We have created an academic-community partnership to ensure CSKT community input and to share decision making about pharmacogenetic research. Our CBPR approach may be a model for engaging AI/AN people, and other underserved populations, in genetic research.

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.

Exploring pathways to trust: a tribal perspective on data sharing.

The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research--such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.

Starting the Conversation - A Childhood Obesity Knowledge Project Using an App.

PURPOSE: Starting the Conversation was a pilot project to test an intervention for childhood obesity, a major public health epidemic, using a free smartphone application (app). The primary aim was to assess students' knowledge of nutritional indicators, physical exercise and use of screen time before and after the intervention. METHODS: The study was conducted in 2011-2012. The sample, recruited from seven high schools in Snohomish County, Washington, was 65.3% minority participants. Of the 118 participants in the sample (n=118), 79 handwrote their responses (n=78) and 36 responded via the app (n=39). We compared the frequency and types of physical exercise, frequency of screen time, and nutritional variables of high school students. Participants used the cell phone app or a handwritten log to record their daily entries for 20 days. RESULTS: Both males (n=43) and females (n=75) grades 9-12 used the app or handwritten entries. Participants who used the app ate less fast food and exercised more, as compared with those who recorded their entries by hand. Screen time usage decreased over the course of the study, based on a comparison of the post-survey level and the pre-survey level. Knowledge of recommended daily consumption of vegetables increased post-test in the app group and knowledge of water consumption increased significantly in both groups. There was no significant difference in BMI pre and post-test. CONCLUSIONS: Patterns of nutritional intake, physical exercise and knowledge of these issues varied pre and post-test. It is critical to further examine factors associated with lack of physical activity and food intake patterns of youth using social media to further address the childhood obesity epidemic. Future research should focus on specific ethnic subgroups and an intervention at the school level aimed at the students with BMI ≥ 95th percentile.

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.

From leaky pipeline to irrigation system: minority education through the lens of community-based participatory research.

BACKGROUND: Higher education has long made efforts to increase underrepresented minority participation in biomedical research and health fields. However, relatively few minority trainees complete advanced degrees or proceed to independent research careers, a loss referred to as the "leaky pipeline." Minority trainees may take alternate pathways to climbing the academic ladder, exiting to pursue multiple disciplinary or community-serving roles. OBJECTIVE: The authors propose a model for understanding minority departures from the education pipeline as a basis for supporting careers that align with community goals for health. METHODS: Concepts of the traditional pipeline training model are compared with a model that aligns with community-based participatory research (CBPR) principles and practices. The article describes an irrigation model that incorporates informal learning from academic and community knowledge bases to prepare trainees for CBPR and interdisciplinary research. Students serve as agents that foster individual, institutional, and social change needed to address health problems while attending to root causes of disparities. CONCLUSIONS: Viewing minority students as agents for community engagement allows institutions to reassess the role training can play in diversifying participation in higher education and research. An irrigation model supports development of an infrastructure that optimizes success at all post-secondary levels, and enhances CBPR capacity wherever trainees live, work, and learn. Linking formal education to informal learning in context of CBPR experiences can also reduce community mistrust of research while nurturing productive research partnerships with communities to address health disparities.

Values in translation: how asking the right questions can move translational science toward greater health impact.

The speed and effectiveness of current approaches to research translation are widely viewed as disappointing given small gains in real population health outcomes despite huge investments in basic and translational science. We identify critical value questions-ethical, social, economic, and cultural-that arise at moments throughout the research pathway. By making these questions visible, and promoting discussion of them with diverse stakeholders, we can facilitate handoffs along the translational pathway and increase uptake of effective interventions. Who is involved with those discussions will determine which research projects, populations, and methods get prioritized. We argue that some upfront investment in community and interdisciplinary engagement, shaped by familiar questions in ethics, social justice, and cultural knowledge, can save time and resources in the long run because interventions and strategies will be aimed in the right direction, that is, toward health improvements for all.

Restoring balance: a consensus statement on the protection of vulnerable research participants.

A diverse panel convened in June 2011 to explore a dilemma in human research: some traits may make individuals or communities particularly vulnerable to a variety of harms in research; however, well-intended efforts to protect these vulnerable individuals and communities from harm may actually generate a series of new harms. We have presented a consensus statement forged by the panel through discussion during a 2-day meeting and the article-writing process. We have identified practical problems that sometimes arise in connection with providing additional safeguards for groups labeled as vulnerable and offered recommendations on how we might better balance concerns for protection with concerns for justice and participant autonomy.

Launching native health leaders: students as community-campus ambassadors.

BACKGROUND: Ancient teaching styles such as storytelling can help Native students to navigate the educational pipeline, and become forces for shaping health and research landscapes. Many experience isolation on campuses where these worldviews are marginalized. OBJECTIVE: Launching Native Health Leaders (LNHL) reduces academic isolation by creating an environment where students identify with Native values while exposing them to health and research career opportunities and interdisciplinary professional and community networks. Student experiences and the LNHL mentoring approach are described through phases of the Hero's Journey, a universal mythic story of human struggle and transformation. METHODS: Undergraduates were recruited to attend health and research conferences through college and university student service programs. Tribal community representatives led group discussions focused on tribal health issues, and students explored intersections of indigenous knowledge with community-based participatory research (CBPR) and their educational journeys. RESULTS: LNHL supported more than sixty students to attend eight professional conferences since 2006 that included themes of cancer control, tribal wellness, and indigenous knowledge systems for health. Students pursuing higher degrees and community service careers participated in conference sessions, small group discussions, and reflection activities with professional and tribal community mentors. CONCLUSION: Mainstream academic systems must include indigenous voices at all levels of leadership to shift the direction of health trends. LNHL builds capacity for community-based efforts by balancing Indigenous and academic mentoring and empowering Native students to navigate their personal journeys and create pathways to serve the needs of Indigenous peoples. Students from other marginalized groups may benefit from an LNHL mentoring approach.

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.