The lack of good data about U.S. American Indian and Alaska Native populations hinders tribes' development activities, but it also highlights a space for sovereign action. In coming years, tribes will no doubt continue to advocate for better national data and at the same time increasingly implement their own "data agendas" by gathering high quality, culturally relevant information about their communities. With more meaningful data, tribal policymakers can make informed decisions about which policies and programs are right for the task at hand. Strategic data planning empowers tribes to tell their communities' stories through their own data, and not that of others.
Health service provision has been an aspect of indigenous-United States relationships for over two hundred years, yet America's First Peoples continue to suffer from poor health outcomes when compared with other racial or ethnic groups in the United States. An important change over recent decades is that more and more tribes are managing their own health care services—a realignment of administration and authority that has the potential to substantially improve American Indian and Alaska Native health in years to come. This paper describes the history of health care provision to federally recognized American Indian tribes. It continues by documenting the sparse research literature on tribal management of health care services and identifying information still needed to bring knowledge of this topic up-to-date. Five challenges for tribal management of health-care services that should be considered by tribes and policymakers in their health-care efforts and brought to bear on future research are discussed. By addressing both tribal control of health-care services and the role of tribes in changes to federally provided health care, this paper adds the lens of tribal sovereignty to current discussions of the history and policy context for American Indian and Alaska Native health.
Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples' justified mistrust further complicates the collection and use of these data. Nonetheless, tribal leaders and communities depend on these data to inform decision making. Reliance on data that do not reflect tribal needs, priorities, and self-conceptions threatens tribal self-determination. Tribal data sovereignty through governance of data on Indigenous populations is long overdue. This article provides two case studies of the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe and their demographic and socioeconomic data initiatives to create locally and culturally relevant data for decision making.
Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples' justified mistrust further complicates the collection and use of these data. Nonetheless, tribal leaders and communities depend on these data to inform decision making. Reliance on data that do not reflect tribal needs, priorities, and self-conceptions threatens tribal self-determination. Tribal data sovereignty through governance of data on Indigenous populations is long overdue. This article provides two case studies of the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe and their demographic and socioeconomic data initiatives to create locally and culturally relevant data for decision making.
Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples' justified mistrust further complicates the collection and use of these data. Nonetheless, tribal leaders and communities depend on these data to inform decision making. Reliance on data that do not reflect tribal needs, priorities, and self-conceptions threatens tribal self-determination. Tribal data sovereignty through governance of data on Indigenous populations is long overdue. This article provides two case studies of the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe and their demographic and socioeconomic data initiatives to create locally and culturally relevant data for decision making. ; W.K. Kellogg Foundation; Morris K. Udall and Stewart L. Udall Foundation ; Open Access Journal. ; This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at repository@u.library.arizona.edu.
Topic: Perspectives on Linkage Involving Indigenous dataIndigenous populations across the globe are reaffirming their sovereignty rights in the collection and use of Indigenous data. The Indigenous data sovereignty movement has been widely influential and can be unsettling for those who routinely use population-level linked data that include Indigenous identifiers. Ethical policies that stipulate community engagement for access, interpretation and dissemination of Indigenous data create an enabling environment through the critical process of negotiating and navigating data access in partnership with communities. This session will be designed to create space for leading Indigenous voices to set the tone for the discussion around Indigenous population data linkage.
Objectives:
To provide participants with an opportunity to build on the themes of Indigenous Data Sovereignty presented in the keynote session as they apply to diverse Indigenous populations.
To explore approaches to the linkage of Indigenous-identified population data across four countries, including First Nations in three Canadian regions.
To share practical applications of Indigenous data sovereignty on data linkage and analysis and discussion.
To center Indigenous-driven data linkage and research.
Facilitator:Jennifer Walker. Canada Research Chair in Indigenous Health, Laurentian University and Indigenous Lead, Institute for Clinical Evaluative Sciences.
Collaborators:
Alberta: Bonnie Healy, Tina Apsassin, Chyloe Healy and William Wadsworth (Alberta First Nations Information Governance Centre)
Ontario: Carmen R. Jones (Chiefs of Ontario) and Jennifer Walker (Institute for Clinical Evaluative Sciences)
British Columbia: Jeff Reading (Providence Health Centre) and Laurel Lemchuk-Favel (First Nations Health Authority)
Australia: Raymond Lovett (Australian National University)
Aotearoa / New Zealand: Donna Cormack (University of Otago)
United States: Stephanie Rainie and Desi Rodriguez-Lonebear (University of Arizona)
Session format: 90 minutesCollaborators will participate in a round-table introduction to the work they are doing. Collaborators will discuss the principles underlying their approaches to Indigenous data linkage as well as practical and concrete solutions to challenges. Questions to guide the discussion will be pre-determined by consensus among the collaborators and the themes will include: data governance, community engagement, Indigenous-led linkage and analysis of data, and decision-making regarding access to linked data. Other participants attending the session will be encouraged to listen and will have an opportunity to engage in the discussion and ask questions.
Intended output or outcome:The key outcome of the session will be twofold. First, those actively working with Indigenous linked data will have an opportunity for an in-depth and meaningful dialogue about their work, which will promote international collaboration and sharing of ideas. Second, those with less experience and knowledge of the principles of Indigenous data sovereignty and their practical application will have an opportunity to listen to Indigenous people who are advancing the integration of Indigenous ways of knowing into data linkage and analysis.
The output of the session will be a summary paper highlighting both the diversity and commonalities of approaches to Indigenous data linkage internationally. Areas where consensus exists, opportunities for collaboration, and challenges will be highlighted.
