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 teambased 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. Woodbury et al. Alaska Native Precision Medicine 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.
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.
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 collected and 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 and may improve patient care, patientprovider relationships, and health outcomes.
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 overgeneralizing about AI/AN tribes.
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