The Development of a Community-Led Alaska Native Traditional Foods Gathering.

Traditional foods and foodways are a critical part of health and well-being for Alaska Native/American Indian (ANAI) peoples. However, many of these foods are being replaced by ultra-processed foods high in fat, sugar, and sodium. The cultural knowledge needed to gather, hunt, and fish to acquire these foods is not being passed down to younger generations, due to lingering effects of colonialism, leading to poor health outcomes among ANAI peoples. Southcentral Foundation (SCF) and the Center for Indigenous and Health Equity (CIIHE) are using community-based participatory research to identify and prioritize food sovereignty interventions to strengthen the transmission of cultural knowledge across generations and improve ANAI health. Through the implementation of a comprehensive landscape analysis and the development of a community advisory board, SCF has planned an Alaska Native Traditional Foods Gathering to highlight regional efforts to document, revitalize, and share cultural food knowledge and practices to build healthy communities.

Framing an Indigenous Food Sovereignty Research Agenda.

Access to healthy and appealing food is essential for individuals to be able to live a healthy and quality life. For decades, food security has been a priority issue for public health professionals. Food sovereignty expands upon the concept of food insecurity (i.e., having access to nutritious and culturally relevant food) by incorporating people's rights to define their own food system. The expanded focus of food sovereignty on food systems prioritizes public health professionals' role in supporting environmental- and systems-level initiatives and evaluating their implications for health, economics, and the natural environment. Food sovereignty is of particular importance for Indigenous peoples (i.e., American Indian, Alaska Native, Native Hawaiian, and Pacific Islander communities). Colonization had demonstrable consequences, with many Indigenous communities being forcibly relocated from traditional lands, alongside the destruction of traditional food sources. Indigenous food sovereignty aligns with the sovereign nation status that American Indian tribes and Alaska Native communities have with the United States. Furthermore, the worldviews that incorporate Indigenous communities' relational responsibilities to care for their food systems, according to their traditional practices and beliefs (Coté, 2016; Morrison, 2011), uniquely positions Indigenous peoples to lead food sovereignty initiatives. In this article, we explore what is currently known regarding food sovereignty and health. We then discuss opportunities to expand the evidence on Indigenous food sovereignty's relationships with (1) health and well being, (2) economics, (3) the natural environment, and (4) programming facilitators and barriers.

Acceptability and feasibility of an intervention for Alaska Native and American Indian couples.

Objective: This acceptability and feasibility study assessed a previously tested movie discussion intervention culturally adapted for a tribal health setting. Background: Despite family and relationships being important in Alaska Native and American Indian (ANAI) cultures, social health interventions supporting committed ANAI couples have not been investigated. Couples watching and discussing movies can promote and sustain relationship health as effectively as intensive skill-building classes. Method: This study culturally adapted a movie discussion intervention. Multiple stakeholders guided adaptations, including changes to intervention duration, recommended movies, discussion guide, and study measures. Eligible participants were cohabitating adults in a committed relationship, with at least one person in the couple being ANAI. Participants watched and discussed movies over 4 weeks at home or in person. Study measures assessed demographics, relationship characteristics, and intervention acceptability and feasibility. Results: Twenty-three couples participated: 87% chose at-home participation, 70% completed the intervention. Almost 90% of couples felt comfortable discussing the movies, felt the discussion guide improved communication, and would recommend the intervention to other couples, but 26% were mildly stressed by the discussions. Conclusion: This intervention was a feasible and acceptable way to help ANAI couples maintain positive relationship features. Implications: This intervention could support ANAI couples in regions with limited access to behavioral health services.

The CPT1A Arctic variant: perspectives of community members and providers in two Alaska tribal health settings.

Newborn screening in Alaska includes screening for carnitine palmitoyltransferase 1A (CPT1A) deficiency. The CPT1A Arctic variant is a variant highly prevalent among Indigenous peoples in the Arctic. In this study, we sought to elicit Alaska Native (AN) community member and AN-serving healthcare providers' knowledge and perspectives on the CPT1A Arctic variant. Focus groups with community members and healthcare providers were held in two regions of Alaska between October 2018 and January 2019. Thematic analysis was used to identify recurring constructs. Knowledge and understanding about the CPT1A Arctic variant and its health impact varied, and participants were interested in learning more about it. Additional education for healthcare professionals was recommended to improve providers' ability to communicate with family caregivers about the Arctic variant. Engagement with AN community members identified opportunities to improve educational outreach via multiple modalities for providers and caregivers on the Arctic variant, which could help to increase culturally relevant guidance and avoid stigmatization, undue worry, and unnecessary intervention. Education and guidance on the care of infants and children homozygous for the CPT1A Arctic variant could improve care and reduce negative psychosocial effects.

Engaging Stakeholders in Social Determinants of Health Quality Improvement Efforts.

Background Social determinants of health (SDOH) affect around 70% of health outcomes. However, it is not clear how to integrate SDOH into clinical practice and health care policy. This quality improvement project engaged stakeholders to identify SDOH factors relevant in an Alaska Native/American Indian health system and how to integrate SDOH data into electronic health records (EHRs). Methods The authors utilized an internal steering committee of clinical leadership; conducted focus groups with patients, practitioners, administrative staff, and clinical leaders; developed programmatic workgroups to engage with the health system; and coordinated with allied health systems. Results The Steering Committee members prioritized uses of SDOH data. Focus groups grounded work in local community values and refined SDOH subdomains. Workgroups developed data visualizations, such as EHR dashboards, to automate data collection for reporting and assess performance metrics. External stakeholders helped innovate ways to utilize SDOH data through community partnerships and advocacy work. Stakeholders liked how the holistic approach of SDOH looks at whole-person wellness and how it can improve patient-practitioner relationships and reduce health disparities. They were concerned about outdated SDOH data and how some sensitive SDOH could lead to unanticipated harms. Leaders emphasized developing an actionable, strengths-based SDOH framework. Conclusions Many initiatives call for integrating SDOH into health care and EHRs. Engaging diverse audiences helps guide the work. This engagement may be particularly helpful for minority-serving health systems. SDOH data collection can be stigmatizing for patients. Stakeholder engagement can mitigate that by identifying which SDOH data elements to prioritize, and how to utilize them.

"Engaging stakeholders in integrating social determinants of health into electronic health records: a scoping review".

Social, environmental, and behavioural factors impact human health. Integrating these social determinants of health (SDOH) into electronic health records (EHR) may improve individual and population health. But how these data are collectedand their use in clinical settings remain unclear. We reviewed efforts to integrate SDOH into EHR in the U.S. and Canada, especially how this implementation serves Indigenous peoples. We followed an established scoping review process, performing iterative keyword searches in subject-appropriate databases, reviewing identified works' bibliographies, and soliciting recommendations from subject-matter experts. We reviewed 20 articles from an initial set of 2,459. Most discussed multiple SDOH indicator standards, with the National Academy of Medicine's (NAM) the most frequently cited (n = 10). Common SDOH domains were demographics, economics, education, environment, housing, psychosocial factors, and health behaviours. Twelve articles discussed project acceptability and feasibility; eight mentioned stakeholder engagement (none specifically discussed engaging ethnic or social minorities); and six adapted SDOH measures to local cultures . Linking SDOH data to EHR as related to Indigenous communities warrants further exploration, especially how to best align cultural strengths and community expectations with clinical priorities. Integrating SDOH data into EHR appears feasible and acceptable may improve patient care, patient-provider relationships, and health outcomes.

Perspectives on Precision Medicine in a Tribally Managed Primary Care Setting.

BACKGROUND: Precision medicine (PM) research and clinical application is moving forward at a rapid pace. To ensure ethical inclusion of all populations in PM, in-depth understanding of diverse communities' views of PM research and PM implementation is necessary. METHODS: Semi-structured interviews were conducted to explore perspectives on PM in a tribally managed healthcare organization. Thematic analysis was used to analyze data from 46 interviews. RESULTS: Participants described gains in diagnostic efficiency, risk identification for preventable disease, and the advancement of population-specific biomedical research as key benefits of PM. Concerns expressed related to privacy risks associated with data-sharing, overpromising on PM, and managing patient expectations related to PM. Stakeholders encouraged PM implementation to be preceded by health education activities that leverage a range of communication strategies. CONCLUSION: Perspectives described in this study may aid in and should be considered prior to implementation of PM in this and other healthcare systems, especially those serving diverse populations.

Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.

BACKGROUND: Precision medicine seeks to better tailor medical care to the needs of individual patients, but there are challenges involved in communicating to patients, health care providers, and health system leaders about this novel and complex approach to research and clinical care. These challenges may be exacerbated for Alaska Native and American Indian (ANAI) people, whose experiences of unethical research practices have left some ANAI communities hesitant to engage in research that involves extensive data-sharing and diminished control over the terms of data management and who may have distinct, culturally-informed communication needs and preferences. There is need for communication research to support Tribal health organizations and ANAI people as they consider implementation of and participation in precision medicine. To address that need, this study characterizes the informational needs and communication preferences of patients, providers, and leaders at an Alaska Native Tribal health organization. METHODS: We conducted 46 individual, semi-structured interviews to explore perspectives on precision medicine and related communication needs among patients, providers, and leaders of a Tribal health organization. Analysis involved team-based coding to identify a priori and emergent themes, followed by identification and recoding of content relevant to precision medicine informational needs and communication preferences. RESULTS: Patients, providers, and leaders were described as both sources and recipients of information about precision medicine. Information deemed essential for making decisions about whether to participate in or implement a precision medicine program included information about the clinical and research applications of precision medicine, benefits and risks, health system costs and impacts, and data management practices. Preferred communication channels included digital and non-digital informational materials, as well as in-person learning opportunities for individuals and groups. Participants also describe contextual factors and barriers that influenced the acceptability and effectiveness of approaches to health communication. CONCLUSION: Results can inform approaches to communicating information about precision medicine to stakeholders within Tribal and other health care systems considering implementation of precision medicine in clinical or research contexts.

Deliberative democracy and historical perspectives on American Indian/Alaska native political decision-making practices.

Public deliberation has risen to the forefront of governance as a technique for increasing participation in policy making. Scholars and practitioners have also noted the potential for deliberation to give greater influence to historically marginalized populations, such as Indigenous peoples. However, there has been less attention paid to the potential fit between the ideals of deliberation and the governance and decision making practices of American Indian and Alaska Native (AI/AN) peoples. In this paper, we begin to address this gap by analyzing accounts of AI/AN governance from the perspective of deliberation, and note areas of overlap, synergy, and conflict. We conduct a close reading of key historical and ethnographic accounts of four historical AI/AN contexts-the Iroquois Confederation under the Great Law of Peace, 19th century accounts of the Ojibwa village, the Santa Clara Pueblo government in pre-19th century, and Yup'ik village life in the early 20th century-and a more contemporary case in the form of the Santa Clara Pueblo's Constitution from the Indian Reorganization Act period. We then apply two sets of key criteria for deliberative democracy-from the scholars Robert Dahl and John Gastil-to these accounts and note the ways in which each system is or is not congruent with these frameworks of deliberation. We find variations between these historical tribal contexts in our analysis. Social components of deliberation, such as respectful discussion and equal opportunities to participate, were partially or fully present in many accounts of governance practices, but it was less clear whether the analytic components, such as discussion of a range of solutions, were included in some forms of tribal governance. We then explore the potential implications of our findings for public deliberation within and in AI/AN tribes. We note that deliberative scholars and practitioners should be wary of over-generalizing about AI/AN tribes.