Manual 21018253

Manual 21018253
PROMOTING FAMILY AND COMMUNITY HEALTH THROUGH
INDIGENOUS NATION SOVEREIGNTY
by
Stephanie Carroll Rainie, MPH
__________________________
A Dissertation Submitted to the Faculty of the
MEL AND ENID ZUCKERMAN COLLEGE OF PUBLIC HEALTH
In Partial Fulfillment of the Requirements
For the Degree of
DOCTOR OF PUBLIC HEALTH
In the Graduate College
THE UNIVERSITY OF ARIZONA
2015
THE UNIVERSITY OF ARIZONA
GRADUATE COLLEGE
As members of the Dissertation Committee, we certify that we have read the dissertation
prepared by Stephanie Carroll Rainie, titled Promoting Family and Community Health through
Indigenous Nation Sovereignty and recommend that it be accepted as fulfilling the dissertation
requirement for the Degree of Doctor of Public Health.
_______________________________________________________________________
Date: 11/10/2015
Nicolette Teufel-Shone, PhD
_______________________________________________________________________
Date: 11/10/2015
Douglas Taren, PhD
_______________________________________________________________________
Date: 11/10/2015
John Ehiri, PhD, MPH, MSc (Econ)
_______________________________________________________________________
Date: 11/10/2015
Celestino Fernández, PhD
Final approval and acceptance of this dissertation is contingent upon the candidate’s submission
of the final copies of the dissertation to the Graduate College.
I hereby certify that I have read this dissertation prepared under my direction and recommend
that it be accepted as fulfilling the dissertation requirement.
________________________________________________ Date: 11/10/2015
Dissertation Director: Nicolette Teufel-Shone, PhD
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STATEMENT BY AUTHOR
This dissertation has been submitted in partial fulfillment of the requirements for an advanced
degree at the University of Arizona and is deposited in the University Library to be made
available to borrowers under rules of the Library.
Brief quotations from this dissertation are allowable without special permission, provided that an
accurate acknowledgement of the source is made. Requests for permission for extended
quotation from or reproduction of this manuscript in whole or in part may be granted by the
head of the major department or the Dean of the Graduate College when in his or her judgment
the proposed use of the material is in the interests of scholarship. In all other instances, however,
permission must be obtained from the author.
SIGNED: Stephanie Carroll Rainie
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ACKNOWLEDGEMENTS
This work was conducted with the intellectual and collegial support of Dr. Nicolette
Teufel-Shone, Dr. Douglas Taren, Dr. John Ehiri and Dr. Celestino Fernández. I am deeply
grateful to Nicky for allowing me freedom, but knowing when to step in with direction and
guidance, Doug for endlessly urging me to rejoin academia in the DrPH program, John for his
mentoring, and Celestino for his unwavering encouragement in getting to the finish line. To the
Ysleta Del Sur Pueblo, Cheyenne River Sioux Tribe, and other tribes and tribal leaders that
participated and shared your stories, thank you! I would especially like to thank Dr. Stephen
Cornell, Dr. Miriam Jorgensen, and Joan Timeche, for teaching me about nation re-building,
supporting me intellectually, and creating a safe space for Indigenous voices. To Steve, for
including healthy communities and related research as a piece of the nation re-building puzzle.
To Miriam, who gently balances her role as friend, colleague, mentor, and supervisor, skillfully
creating and navigating a space for us both to grow, share, and lead. To Joan, who always helps
ground scholarly pursuits in the reality of Indigenous Country. To Desi Rodriguez Lonebear and
Eileen Briggs, data warriors, speak your truths and walk your paths with beauty, grace, and
determination. To Jennifer De La Rosa, a cheerleader and an A-1 research and travel partner.
To Rachel Starks, Yadira Caballero, Renee Goldtooth, and Aurora Trujillo, thank you for your
dedication and ability to endlessly code data, think big thoughts, and freely share your knowledge
and experience. To the Native Nations Institute staff and students past and present, this couldn’t
have been done without the laughter, tears, and words of wisdom you’ve shared. To Sam Sabo,
who blazed the DrPH path for me, every time I see you I learn something new and important,
thanks for being my cheerleader and advocate, always carrying yourself with integrity and love,
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and sharing your knowledge. To my fellow public health doctoral students, Christina Ore,
Carmella Kahn, Addie June-Tsosie, your presence over the years has made each step of the way
easier and more fun. I cannot wait to celebrate your graduation! To Rebecca Zapien, for years of
listening, griping, plotting, and kid trades, we will create a better world even if we never win the
lottery. To Catherine Jones, who helps me navigate everyday life through friendship, childcare,
and fitness accountability, you help me to be a whole person.
To the Ahtna Heritage Foundation, Ecotrust, the W.K. Kellogg Foundation, and the Morris
K. Udall and Stewart L. Udall Foundation for financial support.
To my family I am especially grateful. To my parents, Connie and Ray Carroll, who paved
the path to academia, and always told me that I could do whatever I set my mind to do. To my
fantastic brother, David, and his partner, Celso, who in the darkest hours of dissertating showed up
to feed us and entertain the kids. To my grandmother Virginia Russo for always being impressed.
I also thank my in laws, Shep and Ellen Rainie who have welcomed me into their hearts and
home as their daughter. Thank you for always reminding me that I do a lot, and I do it well. To my
sisters and brothers-in-law Blake and Justin and Damon and Stephanie, thank you for your
graciousness and love.
Finally, to David Rainie, my husband and best friend, thank you for your backing in finishing
this behemoth, and for letting me balance academia with road trips, Phish, and international travel.
Most of all, thank you to our awesome children, Cora Blake, Hayes Zinn, and Denali Rox, may they
each learn from us the importance of unconditional support and love, stepping up to challenge, and
chasing your dreams.
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DEDICATION
For my mother and my father, Connie and Ray,
my fabulous David,
and our wonderful children Cora, Hayes, and Denali.
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TABLE OF CONTENTS
LIST OF TABLES --------------------------------------------------------------------------------- 11
LIST OF FIGURES -------------------------------------------------------------------------------- 12
ABSTRACT ---------------------------------------------------------------------------------------- 13
INTRODUCTION --------------------------------------------------------------------------------- 15
I. EXPLANATION OF THE PROBLEM ----------------------------------------------------- 15
II. SPECIFIC AIMS ------------------------------------------------------------------------ 17
III. RESEARCH ROLES ------------------------------------------------------------------- 19
III. A. Institutional Review ------------------------------------------------------------20
IV. AUDIENCE --------------------------------------------------------------------------- 21
V. DISSERTATION FORMAT-------------------------------------------------------------- 22
VI. BACKGROUND ----------------------------------------------------------------------- 23
VI.A. American Indian Health Status, Health Care, and Tribal Public Health ---------------24
VI.B. Data Challenges and Opportunities ------------------------------------------------31
VI.C. Theories and Frameworks ---------------------------------------------------------39
DESIGN, METHODS, AND RESULTS ---------------------------------------------------------- 48
I. SPECIFIC AIMS ------------------------------------------------------------------------- 48
II. STUDY DESIGN ----------------------------------------------------------------------- 50
III. OVERALL METHODS ---------------------------------------------------------------- 51
IV. QUALITATIVE COMPARATIVE ANALYSIS (QCA) ------------------------------------ 52
IV.A. The QCA Method: An Introduction ------------------------------------------------52
IV.B. QCA Researcher Training --------------------------------------------------------54
IV.C. QCA Recruitment and Study Populations ------------------------------------------54
IV.D. QCA Data Collection and Sources -------------------------------------------------56
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IV.E. QCA Coding and Analysis --------------------------------------------------------57
IV.F. QCA Results --------------------------------------------------------------------60
V. QUALITATIVE METHODS OVERVIEW ------------------------------------------------ 62
V.A. Qualitative Methods Training -----------------------------------------------------62
VI. FOCUS GROUP ----------------------------------------------------------------------- 64
VI.A. Focus Group Recruitment ---------------------------------------------------------64
VI.B. Focus Group Methods -------------------------------------------------------------66
VI.C. Focus Group Coding and Analysis -------------------------------------------------69
VI.D. Focus Group Results -------------------------------------------------------------70
VII. SOCIAL DETERMINANTS OF HEALTH (SDH) CONSENSUS PANEL ----------------- 73
VII.A. SDH Consensus Panel Recruitment -----------------------------------------------73
VII.B. SDH Consensus Panel Methods ---------------------------------------------------74
VII.C. SDH Consensus Panel Coding and Analysis ----------------------------------------76
VII.D. SDH Consensus Panel Results ----------------------------------------------------78
VIII. DATA AND SOVEREIGNTY CONSENSUS PANEL ------------------------------------ 79
VIII.A. Data and Sovereignty Consensus Panel Recruitment -------------------------------79
VIII.B. Data and Sovereignty Consensus Panel Methods -----------------------------------80
VIII.C. Data and Sovereignty Consensus Panel Coding and Analysis ------------------------83
VIII.D. Data and Sovereignty Consensus Panel Results ------------------------------------85
IX. RESULTS BY SPECIFIC AIMS---------------------------------------------------------- 86
IX.A. Specific Aim 1: Manuscript 1 ------------------------------------------------------86
IX.B. Specific Aim 2: Manuscript 2 ------------------------------------------------------88
IX.C. Specific Aim3: Manuscript 3 ------------------------------------------------------92
PROCESS, CHALLENGES, AND CHANGES -------------------------------------------------- 97
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CONCLUSIONS, FUTURE DIRCTIONS, AND IMPLICATIONS ---------------------------- 102
I. CONCLUSIONS AND FUTURE DIRECTIONS ------------------------------------------- 102
I.A. Manuscript 1 ------------------------------------------------------------------- 103
I.B. Manuscript 2 ------------------------------------------------------------------- 106
I.C. Manuscript 3 ------------------------------------------------------------------- 107
II. IMPLICATIONS FOR FAMILY AND CHILD HEALTH ---------------------------------- 110
REFERENCES ----------------------------------------------------------------------------------- 111
APPENDICES ------------------------------------------------------------------------------------ 124
APPENDIX A. MANUSCRIPT 1 ----------------------------------------------------------- 125
APPENDIX B. MANUSCRIPT 2 ----------------------------------------------------------- 169
APPENDIX C. MANUSCRIPT 3 ----------------------------------------------------------- 191
APPENDIX D. DISSERTATION DISSEMINATION ---------------------------------------- 216
APPENDIX E. HUMAN SUBJECTS DETERMINATION ------------------------------------ 221
APPENDIX F. FOCUS GROUP PROSPECTUS --------------------------------------------- 256
APPENDIX G. FOCUS GROUP AGENDA ------------------------------------------------- 258
APPENDIX H. FOCUS GROUP GUIDING QUESTIONS ----------------------------------- 260
APPENDIX I. FOCUS GROUP FOCUSING CARD ----------------------------------------- 262
APPENDIX J. SOCIAL DETERMINANTS OF HEALTH CONSENSUS PANEL AGENDA ----- 264
APPENDIX K. SOCIAL DETERMINANTS OF HEALTH CONSENSUS PANEL GUIDING
QUESTIONS ------------------------------------------------------------------------------------- 266
APPENDIX L. SOCIAL DETERMINANTS OF HEALTH CONSENSUS PANEL DRAFT PAPER
OUTLINE ---------------------------------------------------------------------------------------- 268
APPENDIX M. DATA AND SOVEREIGNTY CONSENSUS PANEL AGENDA --------------- 270
APPENDIX N. DATA AND SOVEREIGNTY CONSENSUS PANEL GUIDING QUESTIONS -- 272
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APPENDIX O. DATA AND SOVEREIGNTY CONSENSUS PANEL PAPER OUTLINE -------- 274
APPENDIX P: INDIGENOUS DATA SOVEREIGNTY AND DATA GOVERNANCE WRITTEN
PRODUCTS -------------------------------------------------------------------------------------- 276
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LIST OF TABLES
Table 1. History of US Government Actions for Health Services to American Indian and Alaska Native
(AIAN) Peoples ------------------------------------------------------------------------------------- 25
Table 2. Indian Health Service (IHS) and Tribally Operated Medical Facilities, October 2010 -------- 27
Table 3. Data Gaps by Policy Area and Population Group - Data Sets with 200 or More Sample Size for
Each Population Group ----------------------------------------------------------------------------- 34
Table 4. Design, Methods, Participants, Outcomes, and Contributions to Specific Aims -------------- 50
Table 5. Tribal Community Case Study Data Collection Methods, Types of Data, and Sources ------- 56
Table 6. Non-Hispanic American Indian and Alaska Native Age-Adjusted Mortality Ratio Domain
Index ------------------------------------------------------------------------------------------------ 59
Table 7. Truth Table Analysis: Lower Post-neonatal Infant Mortality as a Function of Youth and
Language Programs, Current Governance Conditions, and Health Governance----------------------- 61
Table 8. Characteristics of 22 Focus Group Participants ---------------------------------------------- 70
Table 9. Social Determinants of Health (SDH) and American Indian Nations’ Policy Focus Group
Matrix: Dissertation Outcomes by Discussion Themes and Next Steps ------------------------------- 72
Table 10. Characteristics of 8 SDH Consensus Panel Participants ------------------------------------ 78
Table 11. Characteristics of 9 Data and Sovereignty Consensus Panel Participants -------------------- 85
Table 12. Determinants of Health: Indigenous Knowledge and Western World Views ---------------- 93
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LIST OF FIGURES
Figure 1. Ten Essential Public Health Services ------------------------------------------------------- 28
Figure 2. Dissertation Methods ---------------------------------------------------------------------- 51
Figure 3. The Middle Ground: Qualitative Comparative Analysis on the Research Methods Spectrum 53
Figure 4. Determinants of Collective Health and Well-being in US Indigenous Communities -------- 95
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ABSTRACT
BACKGROUND: Indigenous populations in the United States (US) experience worse health
outcomes and higher disease prevalence compared to the US all race population. The World
Health Organization (WHO), Canadian research on Indigenous-specific determinants, the
Harvard Project on American Indian Economic Development, and the Native Nation’s Institute
have all identified governance as a determinant that impacts community health and development.
This dissertation explored the active and potential role of Indigenous nations’ governance, since
the Native nation building era commenced in the 1970s, in protecting and promoting family and
community health. OBJECTIVES: The dissertation aims were to: (1) describe the state of
population data for US Indigenous nations and benefits of engaging with data, data sovereignty,
and data governance for US Indigenous nations, (2) outline the history and current state of tribal
public health relative to other US public health systems, and (3) elucidate the assumptions and
applicability of the social determinants of health framework to Indigenous health contexts.
METHODS: This mixed-methods study integrated retrospective quantitative and primary
quantitative and qualitative data from case studies with six reservation-based American Indian
tribes with qualitative data collected in a focus group and two consensus panels of public health
practitioners and scholars. RESULTS: The results by aim were: (1) self-determination with
regard to health and other population data offers Indigenous nations opportunities to create and
access relevant and reliable data to inform policy and resource allocations, (2) the federal
government and others have not invested in tribal public health authority infrastructures in ways
similar to investments made in federal, state, and local public health authorities, resulting in
tribal public health systems falling below other public health authorities in function and capacity,
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and (3) underlying Euro-Centric assumptions imbedded in the social determinants of health
framework reduce its applicability in Indigenous health contexts. CONCLUSIONS: This study
contributes to understanding the roles of Indigenous nation self-determination and sovereignty
in defining health to align with Indigenous philosophies of wellness. Guided by Indigenousspecific determinants of health, tribes can set community-based, culture-informed methods and
metrics for establishing, monitoring, and assessing public health policies and programs to
support healthy communities and families. RECOMMENDATIONS: Indigenous nations, in
partnership with researchers and other governments as appropriate, should develop framework(s)
for tribal health that include broad, shared, and nation-specific definitions of health, healthy
families and communities, and health determinants. Federal, state, and local governments should
partner with Indigenous nations to improve tribal public health infrastructures and to support
tribal data sovereignty and data governance through building tribal data capacity, aligning data
with tribal self-conceptions, and forming data sharing agreements.
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INTRODUCTION
I. Explanation of the Problem
American Indian and Alaska Native (AIAN)1 populations exhibit far worse health
outcomes and higher disease prevalence compared to the US all races population.1-6 Poor health
has ripple effects within these communities, draining them of human and financial resources,
negatively impacting educational attainment and economic development, and undermining the
cross-generational transfer of culture and kinship.7
Health and medical care reportedly determine only 10 to 20% of a community’s health.8,9
Genetic factors determine approximately 10 to 30% of a community’s health, while social,
behavioral, and environmental factors, termed the “social determinants of health,” comprise up to
70% of the health of communities.8-10 Yet the majority of health research dollars are spent
investigating medical technology and the impact of health services.8 It follows, then, that health
outcomes may be improved through changes in social determinants of health.8
The World Health Organization (WHO) identified governance as a social determinant
that impacts health outcomes.11 Governance is “the system of values, policies and institutions by
which a society manages its economic, political and social affairs through interactions within and
among the state, civil society and private sector. It is the way a society organizes itself to make
and implement decisions.”12 International research has established a positive relationship
1
This dissertation refers to American Indians and Alaska Natives as Indigenous peoples unless the literature source
or the research specifies a population, e.g., American Indian. Indigenous nations and tribes are used interchangeably
to denote federally recognized American Indian tribes and Alaska Native Villages, state recognized tribes, and
unrecognized tribes, unless specified by the literature or research, e.g., federally recognized American Indian
nations.
15
between governance measures (e.g., governmental form and accountability, government
effectiveness) and improved population health (e.g., lower infant mortality rates).13-15
The Harvard Project and NNI research form the basis for the Native Nation Building
model. “Native Nation Building” refers to efforts of American Indian nations to increase
”foundational capacity for effective self-governance and for self-determined community and
economic development”16pxii and “involves a comprehensive effort to rebuild societies that
work.”17
The research presented here integrated the WHO “Conceptual Framework for Action on
the Social Determinants of Health,” Indigenous-specific determinants of health, and the Native
Nation Building model.11,16,18-29 Previous work on indigenized determinants uses individual-level
data.11,20-29 Canadian research identified Indigenous governance and self determination as
important Indigenous-specific social determinants of health.24,25,30 Integrating the mainstream
WHO social determinants framework with Canadian research on Indigenous-specific
determinants and the nation building model focused the research on the role of governance in
building healthy and sustainable AIAN communities and families.
Therefore, the goal of this dissertation research was to provide insight into opportunities
for Indigenous nations’ governance, government, and self-determination actions as they resume
and assume more leadership, responsibility, and engagement for the health of their communities
and families. The research question was: What actions can Indigenous governments and
organizations take to improve the health and wellness of Indigenous communities, families, and
children? This research adds to both the domestic and international discussions of data
sovereignty and data governance for Indigenous nations, Indigenous self-determination in
health, the social determinants of health in Indigenous communities, and Native nation building.
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II. Specific Aims Specific Aim 1: Manuscript 1
To describe the state of population data for US Indigenous nations and benefits of engaging with
data, data sovereignty, and data governance for US Indigenous nations.
This aim will:
•
Review the history of population data challenges for Indigenous peoples
•
Provide two examples of tribal population data endeavors
•
Outline how strategic engagement with data benefited the tribes in these examples
•
Pose questions for future research and inquiry into data sovereignty and data governance for
tribes
Specific Aim 2: Manuscript 2
To outline the history and current state of tribal public health relative to other US public health
systems.
This aim will:
•
Describe the history of tribal public health and the impact of federal and other funding
mechanisms on the history of tribal public health
•
Explore how tribes can use mainstream public health strategies and systems, traditional
conceptions of healthy societies, and the intersection of Indigenous and Western knowledge
to build their public health capacity through governance and self-determination
•
Discuss potential implications and challenges of tribes assuming increased tribal public
health authority for tribal, national, local, and municipal public health systems
17
Specific Aim 3: Manuscript 3
To elucidate the assumptions and applicability of the social determinants of health framework to
Indigenous health contexts.
This aim will:
•
Analyze the assumptions and applicability of the social determinants of health framework to
Indigenous nations via a literature review and consensus panel with Indigenous and other
allied scholars
•
Explore ways that Indigenous knowledge and epistemologies influence health determinants
as well as conceptions of health, well-being, and wellness
•
Examine the implications of moving toward Indigenous community defined health as the
basis for public health and health care endeavors for communities, tribes, the federal
government, other funding entities, and researchers
The specific aims align with the three manuscripts developed for this dissertation
(Appendices A-C) as well as a number of other papers and products presented or in process
(Appendix D).
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III. Research Roles
This research was conducted with funding from a W.K. Kellogg Foundation grant
(P3016653) for the years 2011-2014 with a one-year no cost extension. The principal
investigators, Drs. Stephen E. Cornell and Miriam R. Jorgensen provided feedback and guidance
on overall grant requirements such as reporting and changes to the budget. The dissertation
researcher, referred to as the researcher in the remainder of this dissertation, managed the
research process; supervised and mentored research staff, including senior researchers, graduate
research assistants/associates, and interns; conducted site visits and data collection; oversaw and
directed data coding, calibration, and analysis; communicated with the program officer, principal
investigators and dissertation chair; and responded to unforeseen challenges in the work.
Appendices A-C include three manuscripts for which the researcher lead all research,
analysis, conceptualization, outlining, discussions, and writing. In addition, roles and
contributions for each manuscript also included the following: For Manuscript 1 (Appendix A),
the researcher conducted literature reviews and analysis; conceptualized the paper, crafted the
outline, wrote primary text, conducted key informant interviews, and edited tribal story
contributions; and, networked and found examples of tribal population data collection, worked
with tribal co-authors to create tribal stories, and obtained all tribal approvals for inclusion of
tribal stories in the paper. For Manuscript 2 (Appendix B), the researcher conducted literature
reviews and analysis, conceptualized the paper, crafted the outline, wrote text, and solicited input
and contributions from co-author. For Manuscript 3 (Appendix C), the researcher conducted
literature reviews and analysis; conceptualized the paper and created an outline; facilitated a
consensus panel of researchers and experts in the field (co-authors) around the concepts and
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discussion of the outline; re-drafted the outline; assigned co-author sections for drafting;
coordinated author contributions; and, edited, condensed, and wrote text to ensure that all
sections pertained to the outline and reflected researcher’s intellectual concepts.
III. A. Institutional Review
The University of Arizona Institutional Review Board (IRB) (Appendix E) did not
consider this project human research because data from IHS, WIC, GPRA, US Census, and
other sources were at the aggregate level. In addition, the information collected for Manuscript 1
(Appendix A) about tribal collection of population data did not include human data. However,
since this work was conducted with Indigenous nations, additional ethical research procedures
were required. As such, appropriate processes for obtaining tribal approval were followed for each
tribe. Tribes requested and were assured anonymity. Researchers would not reveal tribal names
or state locations unless approved to do so. These approval processes ranged from a tribal
institutional review board to a regional institutional review board that processes reviews for tribes
in a specific state or IHS area to a tribal resolution to a tribal data sharing agreement. The
researcher also obtained appropriate approval for the tribal data examples.
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IV. Audience
This dissertation represents the work necessary for completion of the Doctorate in Public
Health (DrPH) in Maternal and Child Health, a degree that focuses on linking research and
theory with practice to reduce health inequalities and inequities.31 The dissertation analyzes and
proposes strategies for improving American Indian population health and policy, in line with the
broader dissertation expectations of the Maternal and Child Health DrPH program.32 As such,
the dissertation and the three manuscripts for publication were designed to reach public health
scholars and policy makers to inform public health efforts to improve community health for
American Indian women, children, and families.
This dissertation audiences are tribal governments and program staff; advocacy
organizations interested in Indigenous nations governance; the federal government and other
funding entities; and, scholars working with and for Indigenous nations, especially in the areas of
public health, policy, and community development. As such, a wide variety of outputs have been
or will be shared to generate ideas and action, including peer-reviewed and open access scholarly
publications, policy briefs, presentations, forums, posters, opinion editorials, newsletter columns,
and communities of practice to address data sovereignty and data governance.
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V. Dissertation Format
This dissertation is organized into four sections: (1) Introduction, (2) Design, Methods,
and Results, (3) Process, Challenges, and Changes, (4) Conclusions, Future Directions, and
Implications, and (5) Appendices. The Introduction includes the specific aims, key
considerations such as researcher roles and audience, and a background. The Design, Methods,
and Results section summarizes the design, methods, analysis, and results of the research. The
Process, Challenges, and Changes details alterations to the original specific aims and research
plan as a result of challenges encountered during the dissertation process. The Conclusions,
Future Directions, and Implications section integrates the projects streams of inquiry and
provides recommendations for research and policy based on dissertation outcomes. The section
concludes with implications for family and child health. The Appendices include three
manuscripts that address the dissertation specific aims, dissertation product dissemination,
Human Subjects IRB documentation, the focus group and consensus panel agendas, guiding
questions, and other materials, and data sovereignty and data governance written products. The
researcher is first author on all manuscripts.
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VI. Background
The following section provides an overview of background information related to health
status, health care, and public health for American Indians nations and peoples, data challenges,
social determinants of health, the relationship between governance and health, American Indian
sovereignty and governance, and Indigenous epistemologies.
For this dissertation, the researcher interpreted “literature” more broadly than scholarly,
peer-reviewed publications. Peer-reviewed literature on Indigenous populations and nations in
the US is scarce; rather, literature appears in federal publications, white paper documents, nonprofit reports, web sites, and conference proceedings.33 Additionally, Indigenous peoples and
nations that now share geographies with English settler societies experienced similar colonization
histories.34 Therefore, lack of domestic peer-reviewed articles on Indigenous peoples in the US
can also be supplemented with related articles from Australia, Canada, and New Zealand.35,36
The 2010 US Census reported 5.2 million Americans of American Indian or Alaska
Native (AIAN) heritage, representing about 2% of the US population.37 The single race AIAN
population, or those individuals reporting AIAN heritage alone, comprised 2.9 million people, or
49% of those reporting AIAN heritage.37 In January 2015, the federal government recognized
566 tribal nations; 335 are in the lower 48 states and the remainder are in Alaska; there are no
federally recognized nations reside in Hawaii.38 This dissertation concerns itself with tribes with
reservation lands in the continental US. However, publically available tribal or reservation data
for health outcomes are sometimes unavailable, thus at times data for the general AIAN
population may be presented instead.
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VI.A. American Indian Health Status, Health Care, and Tribal Public Health
American Indian Health Status
In the United States, health inequalities between Indigenous and non-Indigenous
mainstream populations have existed for decades.1,3,39 While some significant improvements in
Indigenous health outcomes have been realized, severe differences persist in life expectancies and
mortality rates.1-3,40-42 The most recently reported top causes of death from 2006-2008 for
AIANs, diseases of the heart and malignant neoplasm, reflect those of the non-AIAN US
population.40 AIAN peoples experience a 4.2 year lower life expectancy compared to US all races,
73.7 years and 78.2 respectively.40
The greatest inequalities in mortality exist for causes linked to the social determinants of
health such as unintentional injuries, diabetes, liver diseases, assault, and suicide.40,43-45 In 20062008, age-adjusted mortality rates were 370% higher from chronic liver disease and cirrhosis,
180% higher due to diabetes, 140% higher due to unintentional injury, 90% higher from
homicide, and 60% higher from suicide for the AIAN population compared to the general US
population.40 While access to medical care can address some inequalities between populations,
many of the differences in mortality are related to social conditions.43,44 For AIAN populations,
colonial expansion and policies to eradicate Indigenous cultures and peoples have contributed to
the contemporary inequalities in morbidity and mortality.46,47
American Indian Health Care
The US has a government-to-government relationship with federally recognized tribes
based on the U.S. Constitution, treaties between the federal government and various tribes,
24
executive orders, and laws.48 This relationship and the series of treaties and other agreements and
actions obligate the US government to provide health care and other services to citizens of
federally recognized American Indian tribes. The United States government has long taken
primary responsibility for the delivery of health care to AIAN populations, an effort led since
1955 by the IHS.3 Table 1 depicts this history.
Table 1. History of US Government Actions for Health Services to American Indian and
Alaska Native (AIAN) Peoples
Year
Action
Changes
1832
4 Stat. 514
1921
The Snyder Act (P.L.
67-85)
Act for the Transfer of
the Indian Health
Facilities to the Public
Health Service P.L.
83-568)
The Indian SelfDetermination and
Education Assistance
Act of 1975
(ISDEAA, P.L. 93638) and amendments
First Congressionally appropriated funds for AIAN health services
to provide smallpox vaccine to AIAN peoples.
Allocated federal funds to the Bureau of Indian Affairs (BIA) to
provide health services to citizens of federally recognized tribes.
Transferred American Indian health care moved from the BIA to
the Indian Health Service (IHS), US Public Health Service,
Department of Health, Education, and Welfare, which
subsequently became the Department of Health and Human
Services.
Provisions for tribal management of health care services via “638
contracts” or “self-governance compacts.”
638 contracts transfer administration of agreed-upon health
services from the IHS to tribes.
Self-governance compacts provide money through block grant-like
mechanisms that allow tribes to administers programs and design
services to meet tribal priorities, in essence giving tribes the right to
decide how to use federal funds.
Established programs and initiatives to improve conditions for the
health of AIAN peoples. 1992 amendments led to the creation of
Tribal Epidemiology Centers (TECs) in 1996 for each of the
twelve IHS regions. TECs work with tribes to monitor health,
improve health services, and identify health priority areas and
possible actions to address them.
The Affordable Care Act amended and permanently authorized
the IHCIA. Also sets forth increased requirements for IHS and
states to consult with tribes regarding Medicaid and health services.
1954
1975
1976
Indian Health Care
Improvement Act
(IHCIA, P.L. 94-437)
and amendments
2010
The Patient
Protection and
Affordable Care Act
(P.L. 111-148)
Since the Indian Self-Determination and Education Assistance Act of 1975 (ISDEAA,
P.L. 93-638) and its amendments, the US government meets this obligation through direct
services or the provision of funds for tribes or other American Indian organizations that develop
25
and submit a plan to provide care.48 As of January 2015, the IHS funded health service provision
for citizens of 566 federally recognized tribal nations and over 2.2 million AIAN people.38,49
The ISDEAA and amendments began a shift in tribal control of IHS health care funding
and facilities, as depicted in Table 2 on the following page.50 Per ISDEAA, 638 contracts
transfer administration of agreed-upon health services from the IHS to tribes. A series of
amendments to the ISDEAA, P.L. 100-472 in 1988, the Indian Health Care Amendments of
1992 (P.L. 102-573), and the Tribal Self-Governance Amendments of 2000 (P.L. 106-260)
enhanced tribal control through the creation of self-governance compacts for health care services.
Compacts provide money through block grant-like mechanisms that allow tribes to administers
programs and design services to meet tribal priorities, in essence giving tribes the right to decide
how to use federal funds.51,52
For the most part, the biomedical model has guided the federal government and tribes’
efforts to provide health care.41,53 In the early years of IHS, services focused on the treatment of
infectious diseases, chronic diseases such as diabetes, and injuries resulting from accidents or
violence.53 In the 1980s, as control over health care services and facilities began to shift from the
federal government to the tribes, the predominant focus on treatment began to change. IHS
began to invest in preventative care and environmental services.41,53 This period that saw a
growing number of tribes asserting self-governing powers and assuming a larger role in the
delivery of health care to their own peoples occurred concurrently with increased attention to
preventative programs as well as to behavioral and mental health issues.50
26
Table 2. Indian Health Service (IHS) and Tribally Operated
Medical Facilities, October 2010
Source: Rainie et al., 2015.
While tribal control of health care services and facilities has increased, a need remains for
investments in tribal public health infrastructure in order to monitor public health, address
emerging needs, provide services, and create informed policies.54
Tribal Public Health
Tribes, along with federal, state, territorial, and local governments, possess public health
authority.55 Tribes view their public health authority as a function of their tribal sovereignty, but
see challenges to exercising that authority such as building public health infrastructure,
27
establishing relationship, roles, and responsibilities with state, county, and local health
departments, and data and information sharing.56
According to the
Figure 1. Ten Essential Public Health Services
WHO (2015), “(p)ublic health
refers to all organized measures
(public or private) to prevent
disease, promote health, and
prolong life among the
population as a whole.”57 The
Centers for Disease Control
and Prevention (2014) utilizes
ten essential public health
services as seen in Figure 1.58
Source: Centers for Disease Control and Prevention, 2014.
Developed in 1994, these serve as the framework for the National Public Health Performance
Standards.59
Tribes’ strengths in providing these essential services include to inform, educate, and
empower.60 Tribes face challenges in monitoring health, mobilizing community partnerships,
assuring a competent work force, and evaluation.60 Most tribal health departments today fall
short of the ten essential public health services for successfully enacting public health
authority.54,60-62
Tribes also face challenges in sharing successes with other tribes and non-tribal entities,
competing for funds, and public health advocacy.54,60,63 Strengths also include resourcefulness and
28
innovation in a public health systems that lack infrastructure and funding as well as expertise in
providing disease-specific services such as diabetes prevention and care.54,60,63
A Brief History of Tribal and US Public Health
US public health entities have experienced significant shifts in focus and funding over the
past 30 years, moving from a disease-based model to a systems model.56,64-67 Figure 1 illustrates
this new way of thinking, with systems management linking ten essential services and three
primary areas of responsibility (assessment, policy development, and assurance). The funding of
state and municipal public health systems via agreements with only general guidance on spending
instead of funding for tribes with specific provisions and reporting exemplifies the shift.66,67
In that same time frame, tribal public health emerged from a federally managed paradigm
with the 1975 ISDEAA and amendments supporting federally recognized American Indian
tribes’ control of health care services through contracting and compacting.68 However, tribes have
retained the federal focus on disease treatment through health care services and interventions.66,67
Similarly funding opportunities has concentrated on specific diseases (e.g., the Special Diabetes
Program for American Indians and Alaska Natives established as part of the Balanced Budget
Act of 1997, P.L. 105-33)69 and rarely supports the development of infrastructure or systems.66,67
Nonetheless, passage of ISDEAA was a pivotal moment as federally recognized American
Indian nations began to experience success in managing tribal resources and programs, including
public health programs and services such as immunizations and food handling safety.50,67,70-75
In the 1992 re-authorization of the IHCIA (P.L. 102-573), the federal government
invested in tribal public health through the creation of Tribal Epidemiology Centers (TEC) that
align with the twelve IHS regions. TECs work with tribes to monitor health, improve health
services, and identify health priority areas and possible actions to address priority areas.76 The
29
TECs improved data quality and access for tribes but have been limited by an emphasis on
creating static data reports and by continuing primary adherence to Western conceptions of
health indicators and outcomes such as morbidity, mortality, and service utilization rates.54,66
In 2010, the Affordable Care Act (P.L. 111-148) extended tribal public health authority
to TECs to increase access to US DHHS data as well as training and technical assistance from
the Centers for Disease Control and Prevention (CDC). Despite the authorization to acquire US
DHHS data, challenges remain for accessing other federal, state, county, and local data,
including a lack of data sharing agreements and fees associated with obtaining data from some
jurisdictions.54 State and local governments as well as private entities also restrict access to some
data due to concerns about personally identifiable information; some state laws prohibit certain
types of health data sharing.77 Subsequently, TECs and tribal public health authorities are
excluded from many local and national surveillance systems.78 While states conduct surveillance
efforts, their monitoring often insufficiently captures AIAN populations.78-80 The absence of
strategies to capture AIAN populations in state surveillance endeavors concerns TECs and tribal
leaders as AIAN peoples are often disproportionally affected by emerging public health
concerns.54 For example, during the H1N1 outbreak, Indigenous peoples experienced four times
the mortality rate than all non-Indigenous populations combined yet the disparities were not
brought to the attention of federal, state or tribal leaders during the outbreak.81
Tribal public health systems are different from other public health systems in the US.
The US public health is system and network focused.66,67 Surveillance, broad, multi-sector
engagement, capacity building, and feedback to inform local and state policy are active
components.66,67 In contrast, tribal public health systems tend to be disease and program focused,
based within an individual tribe, data oriented toward discrete products, engaged only with the
30
community it serves, and limited by tribal consultation requirements and other federal
policies.66,67
Public Health Accreditation
Over the past fifteen years, U.S. mainstream public health has moved toward an
accreditation process for local, state, tribal, and territorial public health authorities.82 Launched
in 2011, the non-profit Public Health Accreditation Board manages the process and accredits
tribal public health authorities.83 Accreditation moves public health entities toward national
standards, increases accountability and credibility, and provides benefits such as assistance with
stronger services and programs and infrastructure improvement.83
In the year the accreditation process was launched, American Indian tribes joined the
discussion and provided comments on tribal engagement.84 Several tribes subsequently have
moved to gain accreditation.62,66,85,86 As of October 2015, three have formally commenced the
process in an active effort to build public health infrastructure.85 As tribal leaders, academics, and
other public health professionals convened to discuss accreditation as tribes build tribal public
health infrastructure and capacity, participants also called for an indigenized public health
framework and strategies to address significant data needs.62
VI.B. Data Challenges and Opportunities
To eliminate inequalities and inequities, the United Nations declared a dire and pressing
need for data, especially disaggregated data, and policies for Indigenous peoples worldwide.87
Tribes require better data, analysis, and information sharing in order to set policies and practices
to address health needs in their communities and apply for funds to finance these efforts.54,88
31
Data Scarcity
Data scarcity implies a lack of available data. For AIAN populations and tribes, public,
private, or protected data often do not exist.54 Where once the US government and others
reported data regularly, e.g., bi-annual BIA Labor Force Reports, IHS statistics for three year
periods, Bureau of Justice Statistics annual data on American Indians and crime, the federal
government no longer issues those reports with the same consistency or at all.5,89-96 This section
provides three examples of data scarcity from the BIA and IHS, as well as an overall picture of
the lack of data for health and well-being.
Bureau of Indian Affairs American Indian Population and Labor Force Reports
From the 1980s until 2007, the BIA prepared reports on the AIAN population eligible
for services from the US Department of the Interior. Data include enrollment, service
population, and labor force presented by state, region, and tribe. Tribes submitted data, with
some omissions due to a lack of resources at the tribal level to collect and report data.89 PL 102477, the Indian Employment, Training, and Related Services Demonstration Act of 1992,
mandates at least biennial reporting of BIA Labor Force data. Such reporting occurred steadily
from the 1980s until the 2005 data report issued in 2007. The BIA did not issue a subsequent
report until a 2014 release of the 2013 report on 2010 data; essentially no data was reported for
2005-2010.89 This latest report changed methodologies by combining tribally submitted data
with US Census data, and also stopped collecting some information, added other information,
and altered how tribes had to report other information. These changes effectively prohibit
analysis of changes over time.97 The Department of the Interior cites inconsistencies and
32
misunderstandings in reporting requirements and survey methodology errors as the reasons for
the gap in reporting.98-100
Indian Health Service Statistics
The IHS prepares two documents Trends in Indian Health and Regional Differences in
Indian Health for release.101 The reports use US Census and IHS data to provide information on
IHS operations and services, as well as AIAN demographics and patient outcomes.5,93 These
documents detail IHS structure, as well as population, natality, mortality, patient care, and
community health statistics at the national and IHS regional levels. To overcome challenges of
small population numbers, IHS aggregated data, e.g., for the years 2002-2004, and compared
that data to general US data for a single year, e.g., the middle year 2003. Historically, IHS
released these publications every two to three years in tandem.91-95 However, that ended with the
2002-2003 editions; IHS did not release an updated version of Trends in Indian Health until
2014, and has not issued an update to the 2002-2003 Regional Differences in Indian Health.93,96
The researcher could not find any public discussion in federal or other documents on this scarcity
of IHS released data.
Westat Report on Health and Wellbeing Data
The US Department of Health and Human Services (US DHHS) contracted with
Westat Corporation, a private statistical consulting firm, to examine data sources for AIAN
population health and wellbeing, report on gaps, and suggest improvements.5,102,103 The 2007
report, Gaps and Strategies for Improving AI/AN/NA Data, found significant gaps and limits to
data availability in critical health and socioeconomic areas for AIAN populations, including child
and family well-being as seen in Table 3.103
33
Table 3. Data Gaps by Policy Area and Population Group - Data Sets with 200 or More
Sample Size for Each Population Group
Source: Westat, 2007.
These three examples elucidate the scarcity of data available for tribes and others to use in
monitoring public health and its determinants, addressing emerging needs, and setting datainformed policies.
Data Inaccuracies
Unreliable data hamper a tribe’s ability to meet the needs of tribal citizens and
community members, achieve strategic goals, and assure healthy, vibrant communities.34,104,105
These data inaccuracies exist across sectors, including demographic data from the US Census,
labor, disease prevalence and incidence rates, well-being, economic, education, child welfare, law
enforcement.34,103,104,106,107 This section details data inaccuracies resulting from US Census
undercounts and a broad range of issues with data presented in the aforementioned Westat
report.
AIAN Enumeration and US Census Bureau Socio-Economic Data
As early as a 1928 The Problem of Indian Administration, more widely known as the
Meriam Report, cited the lack of accurate statistics about Indians as a major problem and
34
suggested the need for additional questions to better reflect the population.108 This legacy
continues; the US Census Bureau continues to have severe undercounts for federal Indian
reservations.106,109-112 The US Census Bureau has taken actions to improve AIAN. Beginning
with the 1980 US Census process, the US Census Bureau directly contacted tribal governments
to share process information, hired Indigenous peoples to work in regional and national US
Census Bureau offices, and distributing public relations information to tribes and at AIAN
conferences.113 By the 1990 US Census count, the US Census Bureau had hired Indigenous
peoples to collect data within their own communities.113 At the advice of an American Indian
Advisory Committee, the US Census Bureau implemented a comprehensive enumeration on
reservations by administering the 2000 US Census long-form to a higher proportion of
households in reservation communities.114 This process enhanced tribal data and statistical
reports.114 Unfortunately, the US Census Bureau moved collection of socio-economic data on the
American population to the American Community Survey (ACS),114 and in effect lost strides
made to improve socio-economic data collected by the decennial Census.106
The ACS created as a timelier alternative to some information formerly gathered by the
Census long form, collects in-depth data about the U.S. population by sending out surveys on a
monthly basis.114 The sample size each year is smaller than the previous long-form Census
sample size; the ACS samples under four million per year while the 2000 US Census long-form
sample size was 17.5 million.106 For American Indian reservations and other populations under
20,000, this results in serious implications.106 Small sample sizes render most ACS variables
unreliable.115 In addition, to obtain reliable information about reservation-based communities,
rather than just a national statistic for AIANs across the U.S., the federal government aggregates
five years of data.115 This method, used to statistically control for the fact that most reservation
35
communities are small and rural, results in a “period of time” view of the reservation community,
which may blur year-to-year changes in population, economic and other characteristics.106
Therefore, ACS data does not dependably characterize AIAN and reservation populations; for
2010 data, the ACS populations count extrapolation fell 14.8% below the 2010 US Census
count.106 The US Census Bureau implemented changes to the ACS in 2011 to address issues of
small sample size; the impact of these changes will not be realized until the 2016 aggregated 5year report.106 Unfortunately, US Census data present the only socio-economic data comparable
for jurisdictions, including American Indian tribes, nationally.106
Health and Well-being Data
The 2007 Westat report, Gaps and Strategies for Improving AI/AN/NA Data, identified
challenges for health, education, employment, justice system and other data sets.103 These large
surveys allow comparisons between populations, but the data are often inaccurate and of poor
quality.103 Issues related to small population sizes and poor response rates result in Indigenous
peoples comprising only a small portion of the overall survey sample, which can lead to reporting
Indigenous peoples in an “other” category aggregated with across races and ethnicities. The rural
location of many reservations results in aggregations across geographies restricting local analyses.
Data inaccuracies also result from the misclassification of Indigenous identity driven by racial
categories that do not resonate with Indigenous peoples or survey collectors imputing
ethnicity.103 Proposed strategies to improve data quality include partnering with Indigenous
communities to administer national surveys for improved sampling of Indigenous peoples,
aggregating data across years as done by the ACS, and oversampling Indigenous peoples.103
Health surveillance efforts sometimes link datasets to more accurately capture Indigenous
peoples.116-118 For example, a recent analysis linked IHS data with state vital statics department
36
mortality data.118 However, these require data sharing agreements that often do not exist or can
be difficult to enact.77
US Census data and the Westat report depict data impacts across policy areas that limit
the ability of public health and other policy makers to make informed decisions regarding the
health and well-being of communities.103,104,106,107
Data Relevance
Others have defined and collected the socioeconomic and health information available to
tribes.34,61,62,103-107 The US Census collects self-reported tribal affiliation that may not align with
tribal enrollment records.34,103-107,119 Similarly, BIA compiles labor force data, IHS reports on
health statistics, and BJS provides information on American Indians and crime.89,90 These
available data generally do not align with tribal self-conceptions, needs, and priorities, and
therefore do not adequately inform those making policy and resource allocation decisions at the
reservation or Indigenous nation level.34,61,62,103-107 Tribal governance of data and data sovereignty
offers options for improving data relevance.120-122
Broadly, data sovereignty is the concept that a nations’ laws apply to digital information
residing within the nation.123 Data governance refers to the ownership, collection, control,
analysis, and use of data.124 Discussions of data sovereignty and data governance have occurred in
Canada resulting in Indigenous owned and controlled national datasets;120-122 no similar
endeavors exist in the US. This section provides examples of data relevance through examples of
vital statistics data and Indigenous lead information governance.
AIAN Mortality Data
Mortality rates approximate community health and the affect of public health
37
endeavors.34,118 Assessing challenges to population health through mortality rates allows
policymakers to develop informed legislation, programs, and strategies.34,118 US mortality data
derived from vital statistics for AIAN peoples are inaccurate, are not always available for tribal
jurisdictions, and do not allow tribes to assess rates for the all tribal citizens regardless of whether
they live on or off the reservation.34,118,125,126 Colonial processes that subjugated Indigenous selfdetermination resulted in identification categories defined by the oppressing government that
may not align with peoples’ self-perception and result in subsequent misclassification and the
inability to aggregate at the nation level.34 In two studies of racial and ethnic misclassification on
US death certificates, up to 30% of AIAN people were misclassified on death certificates, with
misclassification higher in urban areas and lower in rural areas and those areas with a higher
proportion of natives.127,128 The answers to the questions of who is doing the counting and for
what purpose informs the current inaccuracies in AIAN mortality data.34 The methods,
ascertainment, and analysis of the data are not relevant to the peoples and communities they
attempt to enumerate.34 Freemantle, et al. (2015) advocate for partnerships between Indigenous
nations and government statistics offices; international networking and strategizing among
Indigenous peoples facing similar challenges; and national plans to address data shortages and
inaccuracies.34 Data Sovereignty and Data Governance OCAP™
In Canada, the First Nations Information Governance Centre established and
trademarked principles of First Nations information governance as OCAP™, which stands for
ownership, control, access, and possession.129 Originally conceptualized almost 20 years ago as
standards for conducting research with Indigenous communities, the current OCAP™ now
extends to encompass Indigenous jurisdiction and collective rights with respect to information.129
38
The OCAP™ principles are not prescriptive; rather, they allow for contextualization, including
interpretation and application according to local Indigenous cultures and values.129
In Canada, OCAP™ has been widely adopted as guidance for the ethical conduct of
research in Indigenous communities, and many First Nations have implemented the information
governance principles.129 Yet challenges remain, particularly around the nexus of data, laws, and
federal and other governments.129 In addition, while the OCAP™ principles aim to be adaptable
to local situations, the concept is not a panacea; Indigenous communities in Canada have not
universally accepted nor implemented OCAP™129 and some have pursued their own, selfdetermined information governance and research ethics agendas.130 OCAP™ provides guidance
to those seeking to partner or work with First Nations and provides insight to individual
Indigenous nations thinking about data governance.129 However, OCAP™ does not provide
resources for data collection, nor can it replace the important discussions internal to Indigenous
nations concerning familiarity with, control over, and effective use of data to meet the nation’s
self-determined vision of a healthy, sustainable community.129
These examples of data scarcity, inaccuracy, and relevance are challenges tribes and other
face in effectively using data to monitor and inform community health policies, practices, and
services for US Indigenous nations.
VI.C. Theories and Frameworks
This project uses the WHO social determinants of health framework combined with the
Canadian-theorized Indigenous-specific social determinants of health and the Native Nation
Building models.16,24,25,30 Broadly, the integration of these models allows use of WHO’s global
view of social determinants of health, including governance as a determinant, with the
39
particularly important role of governance in building sustainable Indigenous nations and
communities identified by the Canadian-theorized work as well as the Harvard Project and
NNI. In addition, the operationalization of these models focuses on the macro-level
determinants of population health and assesses the potential for AIAN nations to affect
community health through changes in governance.
Together, these models guide the analysis of the relationship between the social and
political context, governance, and perinatal health outcomes, an indicator of population-level
community health.
Reaching for Health Equity
Health equity movements aim to eliminate disparities and inequalities between the most
advantaged social groups and those groups that have less wealth, power, and prestige, due to
social position such as race, ethnicity, sex, or religion.131 As a result of wealth and power
differentials, differences in where people live, work, and play impact morbidity and mortality
rates.132 Systemic inequities affect the political, health, education, and other systems, resulting in
measurable inequalities in health outcomes for disadvantaged populations.132 Taking a health
equity approach argues for a social determinants focus that examines the roles of factors other
than health care in producing and replicating health inequalities, and operationalizing the role of
such phenomena in the production, maintenance, and sustainability of healthy communities.132
The Social Determinants of Health
The World Health Organization (WHO) stated that the social conditions in which
individuals grow, live, and age have a greater impact on health than behaviors, genetics, or health
40
care.133 Social inequality, stress, early childhood experiences, social exclusion, employment
opportunities, social support, food security, and availability of transportation are encompassed
under “social & economic characteristics” that consistently affect the health outcomes of
individuals and communities worldwide.43,44 Within this framework, WHO recognizes that
aspects of the socioeconomic and political context have a critical effect on health and well-being;
it particularly points to governance, culture and societal values, and macroeconomic, social, and
public policies.11,132
Indigenous Social Determinants of Health
In the last decade, international studies have addressed the social determinants of health
in Indigenous communities, the majority in Canada, with some work in Australia and New
Zealand.18-22,24-26,28-30,46,134-136 Indigenous communities’ unique historic, social, and political
experiences yield distinctive social determinants of health such as self-determination;
colonization; migration; globalization; cultural continuity and attachment; relationship with
traditional lands; racism and social exclusion; and justice systems.18-22,24-26,28-30,46,134-136 These
factors have been shown to affect Indigenous health outcomes.18-22,24-26,28-30,46,134-136
In the US, large-scale research about AIAN specific social determinants of health is
sparse. In 1989, Campbell stated that evidence existed that "the epidemiology of Native
American people changed under the hegemony of European contact."137p1 Research demonstrates
that first contact with Europeans, subsequent population decimation by disease and warfare,
federal assimilation efforts, the limited and changing federal definitions of American Indian
nation sovereignty, and the continual redefinition of federal trust responsibility are some of the
factors affecting the health of American Indian communities.137 In 1994, Young described how
41
biology and culture interacted with disease causation, distribution, and control for US and
Canadian Indigenous peoples.138 These two research projects are over 20 years old, and did not
study governance in relation to Indigenous health.137,138 US and international researchers have
called for more information on the social determinants of health particular to Indigenous
communities.21,23,24,26-30,46,135,137,139,140 In addition, virtually all published efforts focused on rethinking the social determinants of health for Indigenous peoples note the poor quality of
existing data as a barrier to development of a specifically Indigenous framework, especially
because of the obstacles it creates for comparative research.18-22,24-26,28-30,46,134-137,141-143
Governance as a Determinant of Health
Governance is “the system of values, policies and institutions by which a society manages
its economic, political and social affairs through interactions within and among the state, civil
society and private sector. It is the way a society organizes itself to make and implement
decisions.”12 Government, an organization, carries out the tasks of governance.144 WHO
identified governance as a social determinant within the socioeconomic and political context that
impacts health equities.11 In a global study, the WHO Regional office for Europe found that
capable governance of health systems led to improved health services and programs.145 But
governance for health should not be limited to health policy; all policy arenas affect and govern
healthy communities, calling for synergistic policies in all areas.145 In addition to policy actions
and effective and accessible services, Blas et al. found that government actions toward healthy
societies should also include protecting human rights and gathering and monitoring data about
population health equity.146
42
The World Governance Indicators (WGI) project tracks governance conditions for over
215 economies, noting changes in conditions from year to year and over time from 1996-2014.147
The WGI measures governance over six dimensions: voice and accountability, political instability
and violence, government effectiveness, regulatory burden, rule of law, and control of corruption.
A plethora of indicators compose these six categories.148 These aggregate measures attempt to
account for governance factors such as how laws are made, how leaders are selected, and citizen
confidence in the system.148 The indicators and aggregate dimensions suffer from measurement
error and bias, specifically as a result of the effort to amass comparative information for over 150
countries.148
The earliest WGI analysis examined the relationship between governance and
development outcomes, such as infant mortality, per capita income, and adult literacy, for
approximately 150 countries for 1997-98.149 No statistically significant relationship was found.14
Nonetheless, the WGI found a strong relationship between governance indexes and infant
mortality rates; for example, reducing corruption by one standard deviation results in 2.5- to 4fold improvement in infant mortality. A similar analysis of 115 countries arrived at the same
conclusion.14
American Indian Governance
Tribes differ distinctly from minority ethnic groups; tribes are sovereign polities with
government-to-government relationships with the US and Native peoples have collective rights
bolstered by international law in addition to their individual rights.48,150 Since the 1970s there has
been a resurgence in American Indian nations engaging in self-governance and self-government—
“the extent that a nation is able to make and enforce its own rules, resolve disputes, problem43
solve when the rules don’t work as well as people might like, and establish its own governing
institutions to carry out these tasks.”144p5
The Harvard Project on American Indian Economic Development (Harvard Project) and
its sister organization, the Native Nations Institute (NNI) have analyzed economic and
community development among Indigenous peoples since the 1980s.16,71,151 The major findings
answered the questions: What government strategies work? “What was different in [nations’]
situations, institutions, and decisions that promoted sustainable development and improved
community welfare?”152 Results indicate that three governance conditions were necessary for
sustained economic and community development: practical self-rule, capable governance
institutions, and cultural match.16,71,151
The Harvard Project and NNI define practical self-rule as Indigenous nations “calling the
shots” or enacting sovereignty; however, what self-rule looks like varies from nation to nation.
Harvard Project and NNI work has shown that when American Indian nations practice practical
self-rule the nations are rewarded with sustained economic and community development when
enacted with capable governance institutions and government legitimacy.16 In Canada,
Indigenous local control of health care services, a form of practical self-rule as communities make
decisions, improved hospitalization rates21 and exertion of First Nations practical-self rule
reduced adolescent suicide rates.30
The WGI project measures governance over six dimensions: voice and accountability,
political instability and violence, government effectiveness, regulatory burden, rule of law, and
control of corruption.148 The WGI found a strong relationship between the governance indexes
and development measures.149 Similarly, Harvard Project and NNI have shown that capable
governing institutions demonstrated through stability, fairness, and effectiveness result in
44
economic and community development, when these assertions are enacted with practical self-rule
and government legitimacy.16,151
Cultural match implies that American Indian governmental institutions have gained
legitimacy by designing governance and government to match the contemporary American
Indian nation’s citizens’ ideas about the organization of authority and the community.16,151.16,151
In HP and NNI research, cultural match was associated with positive economic and community
development (when these assertions were enacted with practical self-rule and capable governance
institutions).
Under ISDEAA (P.L. 95-638), the defined powers of self-determination reflect some
Indigenous nations’ governance powers: control of cultural and religious affairs, use of
environmental and natural resources, business permitting and regulation, social service provision,
public infrastructure, law making and legislation, citizenship criteria, taxation, civil law, minor
crimes criminal law, and constitutional reform.153
The Harvard Project and NNI research form the basis for the Native Nation Building
model. “Native Nation Building” refers to efforts of American Indian nations to increase
“foundational capacity for effective self-governance and for self-determined community and
economic development.”16pxii Nation building “involves building institutions of self-government
that are culturally appropriate to the nation and that are effective in addressing the nation’s
challenges. Nation building involves developing the nation's capacity to make timely, strategically
informed decisions about its affairs and to implement those decisions. It involves a
comprehensive effort to rebuild societies that work.” 17
American Indian nations taking advantage of federal opportunities for self-determination
have experienced positive effects in such areas as economic development, land management, and
45
policing.70-75 Limited research exists, but early evidence from Canada lends support to selfdetermination as a determinant of Indigenous health.20,23,30 In Canada, Indigenous local control
of health care services improved hospitalization rates,21 and exertion of First Nations practicalself rule reduced adolescent suicide rates.30,135
Reclaiming Indigenous Health
Since 1999, Indigenous and ally scholars have provided examples and proposed ways to
recolonize Indigenous communities through Reclaiming Indigenous Planning, decolonizing
research methodologies, and Reclaiming Indigenous Voice and Vision.154-157 Decolonization is not a
social justice, politically correct, anti-racist framework. Rather, decolonization reflects
Indigenous peoples efforts to reclaim and recolonize land, relationships, sovereignty, and
Indigenous knowledge systems.158 Indigenous knowledge systems are largely holistic, ecological,
interconnected, and non-linear. 155-157,159-161
Since 1947, the WHO has promoted a more comprehensive view of health that includes
social and mental well-being in addition to physical health and the absence of disease.162 The
WHO also recognizes that “Indigenous peoples have a similar understanding of health, as wellbeing is about the harmony that exists between individuals, communities and the universe.”163
In the English settler societies of Australia, Canada, and New Zealand, Indigenous
efforts to reclaim and recolonize health abound.120,164-169 In Australia, the National Aboriginal
Health Strategy set in 1989 further Indigenizes the WHO definition by adding cultural wellbeing and community health to the definition of aboriginal health.164 In an updated version
adopted by the National Aboriginal Community Controlled Health Organization Constitution
as amended in 2006, “‘Aboriginal health’ means not just the physical well-being of an individual
46
but refers to the social, emotional and cultural well-being of the whole Community in which
each individual is able to achieve their full potential as a human being thereby bringing about the
total well-being of their Community. It is a whole of life view and includes the cyclical concept
of life-death-life.”169pp5-6 A variety of Maori definitions of health in New Zealand encompass
similar ideas from the Maori world view, including culture, spirituality, and the importance of
the collective in creating the health of a community and its individuals.166,167 The similarities in
these movements include Indigenous action embracing non-linear relationships between health
and illnesses and holistic solutions to improving community health and well-being that utilize
efforts beyond health care and public health.164-166,168,169
A pan-Indigenous theoretical approach to reclaiming Indigenous knowledge systems,
sovereignty, and self-determination regarding health has not been published in the US. The
National Institutes of Health and some tribes have embraced the Medicine Wheel, which
generally utilizes a circular, directional-based approach to including physical, mental, emotional,
and spiritual concepts in approaches to health.170,171 The wheel varies from tribe to tribe: some
tribes depict the wheel in artwork while others build physical constructions; tribes interpret the
four directions as seasons, animals, stages of life, or other parts of nature.171 However, the
Medicine Wheel approach falls short of being truly representative, masking the variety of US
Indigenous nations’ knowledge systems.172
47
DESIGN, METHODS, AND RESULTS
This dissertation section details design and methods not included in the manuscripts in
Appendices A-C, outcomes from analyses, and process results detailing the outputs related to the
aims. The aims are presented here to guide the reader.
I. Specific Aims
Specific Aim 1: Manuscript 1
To describe the state of population data for US Indigenous nations and benefits of
engaging with data, data sovereignty, and data governance for US Indigenous nations.
Specific Aim 2: Manuscript 2
To outline the history and current state of tribal public health relative to other US public
health systems.
Specific Aim 3: Manuscript 3
To elucidate the assumptions and applicability of the social determinants of health
framework to Indigenous health contexts.
This dissertation resulted in three different manuscripts that have a common theme:
Indigenous self-determination in health. Manuscript 1 (Appendix A) discusses governance of
data to inform policy and resource allocation. Manuscript 2 (Appendix B) supports assertions of
sovereignty to strengthen tribal public health at the intersection of Indigenous concepts of health
and well-being and mainstream public health policies and practices to build tribal public health
48
infrastructure. Manuscript 3 (Appendix C) critiques the WHO social determinants of health
framework as it relates to Indigenous knowledge, and presents a new schematic relying on
Indigenous knowledge and epistemologies to guide policy to improve health and well-being
through actions on health determinants.
49
II. Study Design
This mixed-methods study integrated retrospective quantitative and primary quantitative
and qualitative data from six reservation-based American Indian tribes, and qualitative data
collected during a focus group and consensus panels of tribal leaders and staff and public health
practitioners and scholars to elucidate the relationship between governance and community
health as reflected in the data from these nations. Table 4 depicts design contributions to the
aims.
Table 4. Design, Methods, Participants, Outcomes, and Contributions to Specific Aims
Process
Design
Method
Participants
Direct Outcomes and
Manuscripts
Focus group,
Manuscript 1
(Appendix A)
Aims
Tribal
Community Case
Studies
Retrospective
quantitative
and primary
qualitative
data
Case Studies
for
Qualitative
Comparative
Analysis
6 federally
recognized
American
Indian nations
Community,
Governance, and
Culture in the
Health of Native
Nations: A Policy
Forum
Qualitative
Focus group
32 tribal
leaders, public
health
practitioners,
and scholars
Consensus panels,
Manuscripts 2 & 3
(Appendix B & C)
2,3
Native Nations
Institute Social
Determinants of
Health Meeting
Qualitative
Consensus
panel
8 tribal leaders
and scholars
Manuscripts 2 & 3
(Appendix B & C)
2,3
Native Nations
Institute Data
and Sovereignty
Meeting
Qualitative
Consensus
panel
9 tribal
program staff
and scholars
Indigenous Data
Sovereignty and Data
Governance Written
Products (Appendix P)
1
1
50
III. Overall Methods
This mixed-methods study utilized Qualitative Comparative Analysis (QCA)173-175 case
studies, a focus group, and two consensus panels.176 Table 4 above describes the methods
contributing to each aim: the researchers used the QCA case studies and a consensus panel to
address Aim 1 and the focus group and a consensus panel for Aims 2 and 3. The schematic in
Figure 2 displays how the experiences with the six QCA case study tribes guided the researcher
in establishing the focus group discussions to elicit feedback on the social determinants of health
for Indigenous communities. The focus group results formed the basis of the consensus panel
inquiries into the applicability of the WHO social determinants of health framework for
Indigenous communities and data sovereignty for Indigenous nations.
Figure 2. Dissertation Methods
51
IV. Qualitative Comparative Analysis (QCA)
IV.A. The QCA Method: An Introduction
Qualitative Comparative Analysis (QCA) allows in depth analysis of conditions
(independent variables) that may be related to a chosen outcome condition (dependent variable)
for a set of cases.173-175 QCA answers the question, “In what context is there a connection
between the conditions and the outcome?”173-175 Answers to this question provide information
about the context and are actionable.173-175 Utilizing truth tables and Boolean algebra, QCA
reports configuration(s), or combinations of conditions, which are related to the outcome. These
are interpreted using consistency and coverage.173-175 Consistency describes the proportion of cases
with membership scores in a condition or a set of configurations that displays the chosen
outcome.173-175 Coverage gauges the degree to which the proportion of cases with membership
scores in a cause or set of configurations accounts for cases of the outcome.173-175 The analysis
itself is an iterative process where the researcher calibrates the conditions, refines the input and
interprets the results based on case knowledge. 173-175
QCA conditions, a general term for ‘variables’, can be binary (coded as 0 for full nonmembership or 1 for full membership in the set), resulting in a crisp set.174,175 Alternatively,
conditions can be calibrated on the continuum from 0.0 to 1.0 based on theoretical, inductive,
mathematical, statistical, and in-depth substantive knowledge.174,175 This method, called fuzzyset QCA analysis, allows for quantitative-like interval or ratio scores, while retaining the ability
to qualitatively assess whether or not a specific case is more in or out of the set.174,175 For
example, a membership score of 1.0 is a score of full membership, while 0.0 remains full non-
52
membership.174,175 The score of 0.5 is one of maximum ambiguity.174,175 Within this continuum,
a score of 0.8 or 0.9 indicates that membership is more in than out.174,175
QCA provides
Figure 3. The Middle Ground: Qualitative Comparative Analysis
on the Research Methods Spectrum
an analytic middle
ground between case
study-based analysis
and variable-driven
statistical analyses as
seen in Figure 3.177
The analytic middle
Source: Jordan et al., 2001.
ground of QCA allows examination of the combination of conditions that lead to an outcome,
differing combinations of conditions that may lead to the same outcome, and conditions that
may be sufficient but not necessary for the outcome.173-175,177 Jordan et al. (2011)177 defined three
advantages to the QCA analysis. (1) QCA allows a more in depth analysis of situations where a
condition leads to an outcome only in combination with one or more conditions, known as
configurations.177 Regression analysis uses interaction terms to assess configurations, but is
limited by small numbers and interpretation difficulties in situations where there are more than
one interaction term.177 The attention to more than one interaction term is particularly important
as the Harvard Project and NNI’s findings surrounding practical self-rule, capable governance,
and cultural match found that these conditions occur together, and to some degree interact.16,151
(2) QCA allows the identification of multiple pathways to an outcome.177 Regression and other
correlational analyses mask the effects of independent variables that only have effects in a subset
of the outcomes.177 QCA reveals pathways that may differ across cases.177 Identifying multiple
53
configurations acknowledges that there are many ways to achieve an outcome, and sometimes
there is no right or best way.177 (3) QCA allows the analysis of sufficiency through the settheoretic nature of the method.177 Conditions are sufficient when their presence almost always
leads to the outcome, but is not the only way to produce the outcome.177 Thus, for instance, if all
AIAN nations that control their health care services have lower post-neonatal infant mortality
rates, control might be considered a sufficient condition for better lower post-neonatal infant
mortality rates, but other conditions may exist that also lead to better outcomes. Sufficient
conditions may be areas where AIAN nations want to invest resources to enhance community
health.
IV.B. QCA Researcher Training
The project research team has both QCA training and experience. The researcher and
two senior research colleagues received training in QCA methods from Charles Ragin,173-175 the
creator of the QCA method, via academic courses at the University of Arizona. In addition,
Charles Ragin173-175 reviewed, edited, and approved the proposed research protocol as a class
project presented by the researcher.178 One senior researcher utilized QCA to complete a master’s
thesis in sociology at the University of Arizona.179 The second senior researcher conducted data
collection, coding, and analysis for a project using QCA as a graduate researcher.180
IV.C. QCA Recruitment and Study Populations
QCA case study recruitment was guided by a set inclusion and exclusion criteria.
Inclusion criteria were federally recognized, reservation-based American Indian nations.
Excluded were non-federally recognized American Indian nations or federally recognized
54
American Indian nations that do not have federal Indian reservation lands. Based on these
parameters, 297 tribes were eligible. Over 200 Alaska Native villages and 38 Oklahoma tribes,
which have federally recognized governing institutions but do not have federal Indian reservation
lands, were excluded. Urban American Indian and Alaska Native communities were excluded, as
they have neither federally recognized governing institutions nor reservation lands.
Tribes were recruited through two primary mechanisms: (1) a letter of invitation and (2)
personal invitation by phone or email to the researcher’s and PIs professional and social
networks.
A letter of invitation was sent via email and US postal service to the tribal leader and
tribal health department director, if known, of all 297 eligible tribes. The funding entity, the
W.K. Kellogg Foundation, stipulated active recruitment in three focus states: Michigan,
Mississippi, and New Mexico. The researcher followed up with the tribes in those states with a
phone call and email(s). If there was no response or interest, no further contact was made.
Recruiting through social and professional networks was initiated to generate interest and
participation through direct contact that relied on active relationships between individuals or
institutions. The limitation of this method is sampling bias.
If a tribe expressed interest the researcher worked with a tribe-specific contact person to
determine the appropriate steps for participation, e.g., tribal resolution, tribal IRB, or other
tribe-specific process. Tribal chairs appointed site liaisons. These liaisons included tribal
department directors: one education, one economic development, one legal, and three health or
health and human services department directors. All tribes retain anonymity unless specifically
waived for a publication, presentation, or other venue via the appropriate approval process at
each tribe.
55
IV.D. QCA Data Collection and Sources
QCA Case study Data collection occurred through four mechanisms: (1) researcher
requests for tribal data and documents, (2) site visits to each tribe, (3) researcher collection of
publically available data, and (4) data previously collected and coded by the PI and researchers.
Table 5 displays the methods, types, and sources of data.
Table 5. Tribal Community Case Study Data Collection Methods, Types of Data, and
Sources
Data Collection Method
Data request to tribe’s site
liaison or designee
Type of Data
Secondary quantitative aggregated
individual-level socio-economic,
demographic, and health data;
secondary quantitative or
qualitative data via documents such
as constitutions, judicial and legal
codes, policies and procedures, and
program reports and brochures
Site visits with tribe’s
liaison and others
Primary quantitative and qualitative
community-level data about nonwritten constitutions, tribal
programs and resource allocation
Primary quantitative and qualitative
community-level data such as tribal
constitutions, tribal judicial and
legal codes, program characteristics
including existence of youth,
language, traditional foods, and
lands programs, services offered,
populations served
Secondary quantitative aggregated
individual-level data
Internet searches
PI and researcher datasets
Secondary quantitative communitylevel data
Sources
Tribal councils or chairs offices, tribal
economic development departments,
tribal education departments, tribal
health departments, tribal lands or
environmental department, Special
Supplemental Nutrition Program for
Women, Infants, and Children
(WIC) reports, Indian Health Service
(IHS), Government Performance and
Results Act (GPRA) data, state vital
statistics offices
Tribal chairs, tribal program directors
and staff
Tribal web sites, tribal program
reports
WIC reports, IHS statistics, state vital
statistics offices, peer-reviewed journal
articles
Institutional conditions such as
constitutions, courts, and tribal
control of services previously collected
and coded by a PI and a research
associates
The researcher and a research associate conducted two-day site visits at each of the six
tribes. The tribal liaison hosted the researchers for the site visit, provided access to existing data
56
or documentation, set up meetings with tribal chairs, program directors, and staff to obtain data
or documentation, and facilitated requests to IHS, WIC, tribal and regional health clinics, and
other secondary data sources. The researchers also obtained publically available data by regions as
via the IHS’ Regional Differences in Indian Health 2002-2003 with data from 1999-2001 and in
the June 2014 supplement to the American Journal of Public Health with data from 1990-2009.4,5
IV.E. QCA Coding and Analysis
The researcher, two senior research colleagues, and the research assistant coded the data
per QCA methods and processes.173-175 QCA refers to coding as calibration. For quantitative and
qualitative data, calibration required knowledge of the various tribes, their conditions (i.e.,
variables), and the outcomes gained from site visits, secondary data, and documents. In-depth
discussions regarding condition definitions and parameters guided calibration. Calibration used
theoretical, mathematical, statistical, inductive, and qualitative knowledge to code the individual
conditions and outcomes. The outcome and governance domains comprised individual
conditions and were calibrated using the same process as individual conditions. Researchers
documented calibration discussions, criteria, and decisions via detailed note taking with code
sheets for each condition and domain and photographs of decisions and calculations recorded on
a white board.
Governance Conditions and Domains Governance holds some relationship with community health.13,14 This study resulted in
12 governance conditions (variables) combined in a variety of ways to create eight governance
domains (indices) in line with the Indigenous-focused and mainstream literature on governance
and determinants of community development such as self-determination, practical self-rule,
57
capable governance institutions, and government legitimacy.16,71,151 Researchers selected
conditions that American Indian nations could influence via policies and resource allocation, e.g.,
constitution, legal codes, and tribal programs.
Outcome Conditions and Domains
No comparable outcomes data from tribal sources, IHS, WIC, GPRA, state vital
statistics offices, or peer reviewed publications existed across all six tribes. Therefore, researchers
coded mortality data from the June 2014 supplement to the American Journal of Public Health
(AJPH) with data ranging from 1990-2009.4 The six tribes were located in four regions of data
reported in the AJPH supplement, limiting the outcome variability to four.4
The mortality ratios compared non-Hispanic AIAN mortality rates based on IHS
registration data linked with National Death Index records with mortality rates for Whites to
adjust for racial misclassification as defined by Espey et al. in the AJPH June 2014 supplement.181
Post-neonatal infant mortality and youth suicide ratios were calibrated to represent child
and community health with respect to the original aims. Post-neonatal infant mortality ratios
comprised infant deaths occurring at 28 days through 11 months aggregated for the years 19992009.4 Adolescent suicide included death by suicide under the age of 25 aggregated for the years
1999-2009.182
Researchers also created a mortality domain comprised of age-adjusted mortality ratios to
provide another community health outcome for analysis. Table 6 details the mortality ratios in
the mortality domain, including mortality ratios related to alcohol, cancer, diabetes, influenza
and pneumonia, HIV, heart disease, infectious diseases, injuries, stroke, and tuberculosis.4
58
Table 6. Non-Hispanic American Indian and Alaska Native Age-Adjusted Mortality
Ratio Domain Index
Condition
(Variable)
Alcohol
Aggregation
Period (Years)
1999-2009
Definition
Underlying cause of death alcohol attributable via Centers for
Disease Control and Prevention’s Alcohol-Related Disease
Impact estimates, all ages
Cancer
1990-2009
Cancer as underlying cause of death by International
Classification of Disease 9th Edition (ICD-9) or Classification
of Disease 9th Edition (ICD-10) codes recoded to
Surveillance, Epidemiology, and End Results (SEER) Cause
of Death Recode, all ages
Diabetes-related
1990-2009
Diabetes as underlying cause of death or a multiple cause of
death by ICD-9 or ICD-10 code on death certificate, 20 years
or older
Influenza and
1990-2009
Influenza or pneumonia as an underlying cause of death by
pneumonia
ICD-9 or ICD-10 code on death certificate, all ages
HIV
1990-2009
HIV as underlying cause of death by ICD-9 or ICD-10 code
on death certificate, all ages
Heart disease
1999-2009
Heart disease as underlying cause of death or a multiple cause
of death by ICD-9 or ICD-10 code on death certificate,
adults age 35 and older
Infectious diseases 1999-2009
Infectious disease as an underlying cause of death by ICD-9
or ICD-10 code on death certificate, ICD-9 codes modified
to be consistent with ICD-10 codes, all ages
Injury-related
1990-2009
Injury as an underlying cause of death by ICD-9 or ICD-10
code on death certificate, ICD-9 codes modified to be
consistent with ICD-10 codes, all ages
Stroke
1990-2009
Stroke as underlying cause of death by ICD-9 or ICD-10
code on death certificate, adults age 35 and older
Tuberculosis
1990-2009
Tuberculosis as an underlying cause of death on death
certificate, all ages
Source: American Journal of Public Health, 104(S3). June 2014.
Researchers conducted a variety of fuzzy-set QCA analyses using the 2009 revision of the
fs/QCA 2.0 software (see www.fsqca.com). Initial analyses toward the original aims used postneonatal infant mortality as the outcome with various combinations of conditions. Outcomes for
subsequent analyses included adolescent suicide, as another child health outcome, and the
mortality domain.
59
IV.F. QCA Results
The QCA case studies include six federally recognized, reservation-based American
Indian nations that accepted the invitation to participate in this research. No tribes were
recruited via the letter of invitation coupled with a follow-up phone call or email. Six tribes were
recruited through the researcher and PIs’ professional and social network contacts.
Researchers conducted a variety of analyses with post-neonatal infant mortality,
adolescent suicide, and the mortality domain as outcomes. The conditions used varied. The
researchers, using inductive reasoning per Ragin’s QCA method,173-175 attempted various
combinations of conditions and outcomes but analyses did not yield valid results as indicated by
measures of consistency. Consistency describes the proportion of cases within a set of causal
configurations that displays the chosen outcome.175 For example, in Table 7
“governance_now*health_gov” and “~governance_now*~health_gov” are two configurations in
cases that have lower infant mortality rates. “Consistency, like significance, signals whether an
empirical connection merits the close attention of the investigator.”175p45 Fuzzy-set QCA analyses
utilize a 0.80 consistency cut off; models with consistency 0.80 or over signal that the connection
between the conditions and the outcome merit further investigation.175
Table 7 presents the results of the analysis of post-neonatal infant mortality for the six
participating tribes as a function of types of tribal language and youth programs, current
governance conditions, and health governance, resulted in two combinations of conditions, i.e.,
causal configurations. Cases (tribes) calibrated with lower levels of current governance assertions,
e.g., governance now, and lower health governance as well as cases calibrated with higher
governance now and higher health governance were subsets of the set of cases with lower post-
60
neonatal infant mortality. Youth and language programs did not appear in any of the causal
configurations. In this analysis, and all other analyses conducted by the researchers, consistency
was below 0.80.
Table 7. Truth Table Analysis: Lower Post-neonatal Infant Mortality as a
Function of Youth and Language Programs, Current Governance Conditions,
and Health Governance
Raw coverage
Unique
Consistency
Causal Configurations
coverage
~governance_now*~health_gov
0.739130
0.347826
0.809524
governance_now*health_gov
0.521739
0.130435
0.421053
solution coverage:
0.869565
solution consistency:
0.506329
Post-neonatal infant mortality: fuzzy set calibrated ratio of infant deaths 28 days through 11 months for nonHispanic American Indian and Alaska Natives compared to non-Hispanic Whites.
Youth programs: existence of a youth program and inclusion of activities such as language, culture/traditions,
education/tutoring, sports, justice systems, and substance abuse.
Language programs: Existence of language programs, whether or not the program targets programming to
subpopulations, e.g., toddlers, families, proportion of programming that is passive, e.g., all students in tribal school
must take the language in grades K-8.
Traditional foods programs: Existence of traditional foods program or activities, and the role of institutional
structures in traditional food activities, traditional food programming in multiple sectors such as cultural activities or
served in Head Start, citizen engagement e.g., community gardening, cultural use and access, and the length of
program(s) existence.
Health governance: fuzzy set calibration of self-determination over health care services via IHS
services/contracting/compacting spectrum and tribe use of third party billing.
Governance now includes current governance actions such as a currently exiting independent appellate court,
whether or not tribal councils members have staggered terms, existence of internal and external data sharing
protocols, length of time from researcher request of data to data transfer, existence of data other than data necessary
for reporting purposes, e.g., grant, health governance, language programs, youth programs, and traditional foods
programs.
frequency cutoff: 1.000000; consistency cutoff: 0.495614
QCA is suited to sample sizes of 5-30.183-185 This dissertation project included six cases, but data
limitations restricted the outcome variation to four, thereby limiting case variability to four. Four
cases did not meet Ragin’s characteristics of 5-30 cases;183-185 insufficient consistency rendered
the results invalid.
61
V. Qualitative Methods Overview
Qualitative methods included a focus group and two consensus panels conducted via
standard methods.176,186,187 The researcher created the focus group to elicit a wide variety of ideas
from a diverse array of participants.176,188-191 The consensus panels narrowly focused on particular
ideas and gathered experts on the topics to achieve feedback and produce a written product.176,192194
The consensus panels, guided by the researcher, were a continuous conversation that included
consensus panel participants as co-learners and co-producers of the ideas.155,156
The researcher assured reliability and validity of the methods and contribution to the
research outcomes through an iterative process affecting all aspects of the focus group and
consensus panels including triangulation of qualitative method results with review of relevant
literature and other documents and discussions with other researchers and practitioners.191 The
process included creating focus group and consensus group guiding questions based on available
literature, research with the six tribes, and conversations with PIs and researchers.191 Standard
note taking procedures were followed during the focus group and consensus panels which
researchers used to produce written summary documents.188,191 The researcher also verified the
information provided through the consensus panels via follow up conversations over email,
phone, or videoconferencing.188,191 This method of assuring reliability and validity resonates with
both Western qualitative research methods and Indigenous methodologies.155,156,176,186-189,191,195,196
V.A. Qualitative Methods Training
The PIs, the researcher, and one senior researcher have been trained in ToP Facilitation
Methods, a two-day group discussion facilitation course that included group dialogue, group
questioning, and consensus building methods.197 A PI and a senior researcher have received Art of
62
Hosting training focusing on large group discussion facilitation.198 The researcher and PIs have
over 15 years experience conducting focus groups, consensus building, and facilitated discussions.
63
VI. Focus Group
The Native Nations Institute hosted a focus group, Community, Governance, and Culture
in the Health of Native Nations: A Policy Forum (Social Determinants of Health (SDH) and
American Indian Nations’ Policy Focus Group), in Tucson, AZ, April 14 and 15, 2014. The
focus group sought input on what SDH conditions generally not considered in mainstream
public health approaches might influence the relationships between governance and community
health, the intermediate factors that might be mediating the relationships, policy implications for
tribes, and next steps for the researchers and participants via a series of moderated discussions.
Standard focus group methods from social science189,199 and medicine190 guided the researchers in
selecting participants, creating guiding questions, and analyzing the data.
VI.A. Focus Group Recruitment
The researcher initiated and managed the invitation process, including drafting the focus
group prospectus (Appendix F). The prospectus summarized the event and provided an outline
of the convening’s purpose and intended outputs; it was created to serve as the basic language for
email invitations. The research team finalized the document over a two-week period. The PIs
and two senior researchers edited the document individually. The researcher then collated
feedback and produced a draft. A graduate student researcher and administrative assistant who
had not yet worked on the project reviewed the document to check for clarity and to minimize
unintended interpretations.189 The researcher again collated feedback and produced the final
draft. The research group approved the final document during a planning meeting.
64
The researchers used systematic, non-probabilistic sampling to create a group of
participants with a range of experiences related to Indigenous SDH in order to stimulate
conversation and elicit comments that individuals may not have made during individual key
informant interviews.190,191 Specific invitees included a single representative, either a tribal leader
or tribal department head, from each of the six tribes and the W.K. Kellogg Foundation program
officer. The researcher and PIs invited additional participants from three target groups from
various fields that address the interface of indigenous health and the social determinants of
health: (1) scholars, (2) tribal leaders and program staff, and (3) international scholars or
Indigenous leaders. Researchers desired input from international in addition to US participants
as the field of Indigenous SDH in Australia, Canada, and New Zealand has produced more
publications than in the US.18-22,24-26,28-30,46,134-136 The research team created the invite list through
an iterative process, adding individuals as invitees declined attendance. Subsequent invitees were
determined with the intention of maintaining attendee diversity in the three target areas.
Two to three months prior to the focus group, the researcher or a PI sent invitations to
participate via email. The prospectus was used as the base of the email invitation; the sender
personalized the invitation based on professional or personal relationships with the invitee and
the invitee’s existing level of knowledge of the project, e.g., some invitees already participated in
the project as caste study tribal leaders others may have heard of the project and the project may
have been a new idea to others. If the invitee did not respond to the initial email the researcher
followed up with an email within two weeks and a phone call within a month of the original
email invitation date. The invitation indicated that the project would pay for participants travel
costs.
65
Once an invitee accepted participation in the focus group he or she was provided with a
confirmation letter that provided travel and accommodation, biography, and other information
requests.
VI.B. Focus Group Methods
The researchers selected a larger size focus group of 20-25 participants that would take
the form of a forum. The larger focus group allowed the researchers to solicit feedback from
more individuals over a longer period of time utilizing a structured agenda (Appendix G).189
Focus Group Planning and Preparation
The researcher drafted the agenda (Appendix G) and guiding questions (Appendix H) to
focus on specific topics and gather knowledge and opinions from participants.188-190 During a
series of planning meetings and emails, the researcher, PIs, and senior researchers revised the
guiding questions for clarity and to gather input in five areas: (1) the current state of knowledge,
both in practice and documented in peer-reviewed publications, of SDH in Indigenous
communities, (2) ideas for what actions Indigenous nations can take outside the health care
system to improve health outcomes, (3) how the research community can better serve the needs
of Indigenous nations with regards to SDH, (4) other topics that participants identified as
important to the Indigenous SDH discussion but were not yet discussed, and (5) next steps for
the group. Other Native Nations Institute program and administrative staff reviewed the guiding
questions document, providing written and verbal feedback at a planning meeting to improve
clarity and reduce unintended interpretations.189 The research team finalized the document in a
planning meeting.
66
In preparation for participation and to provide background on Indigenous SDH and the
relationship between SDH and governance, the researcher required all moderators, hosts, and
note takers to read a WHO paper on SDH and governance,145 a paper on Indigenous SDH in
Canada,22 and the prospectus (Appendix F). The researcher, PIs, moderators, and senior
researchers then worked together at a meeting to create moderator prompts for each of the
discussion questions (Appendix H).
One week prior to the event, participants were emailed the agenda, a participant list, and
final logistical details. Upon arrival at the event, participants were given a folder containing the
agenda (Appendix G), a focusing card (Appendix I), a participant list with bios, and logistical
documents.
Focus Group Convening
The agenda (Appendix G) structured the focus group to allow time for participants to
progress through the five steps of group discussion as presented by Finch and Lewis (2003):
forming, storming, norming, performing, and adjourning.189 The focus group began with a
forming session that included dinner where the researcher provided a welcome, overview of the
schedule and folder contents, and ground rules for speaking, listening, and sharing.189 Next, for
storming, participants introduced themselves and had the dinner to connect with each other.189
The researcher scheduled the dinner in order to allow researchers and participants to become
familiar with the process, the location, and the other participants prior to the start of the focus
group.188,189
The researcher, a senior researcher, and the two project PIs facilitated discussions over
the daylong event. Participants sat in a square of four tables to allow individuals to see one
67
another.189,190 Snacks and refreshments were provided throughout the day as well as breakfast and
lunch.189,190 Participants indicated that they would like to speak by raising their hand; the
moderator or an assistant kept a running list of discussants and participants spoke in the order of
their indicated interest to speak.189,190 Moderators had agreed beforehand to assist one another
with circling the conversation back to the questions at hand if necessary using the guiding
questions and prompts.189,190
The convening began with norming session that included three presentations focusing on
three Indigenous nations’ experiences with the SDH framed by the presenters’ perspectives as
tribal leaders and program staff.189 Researchers then commenced the performing session by
gathering input from focus group participants via a series of moderated discussions guided by the
agenda and discussion question prompts.189 The day closed with an adjourning discussion of what
was left out of the day’s discussion and possible next steps for the group or researchers.189
Focus Group Documentation
The researcher prepared the senior researcher and graduate student researcher note takers
one week prior to the focus group, indicating that notes should include summarizations of
participant statements with verbatim quotes as appropriate to record novel ideas, emphatic
wording, or disagreements, a list of emergent themes, and list of referenced documents or web
sites.191 All note takers had previous focus and large group note taking experience. In addition to
the two note takers, since the convening was not recorded, the researcher and a PI alternated
taking thematic notes on a flip chart that the participants could view and edit as the discussion
progressed.190 Researchers also took their own personal notes.
68
Within a week after the event, the graduate student researcher combined her notes with
the flip chart notes and the senior researcher then integrated her notes into the document and
edited the draft. The researcher, PI, and the senior researchers then reviewed and analyzed the
notes per the coding and analysis section below.
Over the second week after the event, the senior researcher prepared the notes into a
summary document. The researcher edited the summary and distributed the final event
summary, including a list of overall themes and next steps, a list of resources and references, a
Dropbox folder link with reference documents, and a digital participant list to attendees two
weeks after the focus group convening. The researcher watermarked the forum summary with
“do not circulate” and recipients were asked not to circulate the document.
VI.C. Focus Group Coding and Analysis
The researcher used five approaches to increase the reliability of the documentation and
the validity of the analysis. (1) Researchers enhanced validity through the use of flip chart notes
viewable by all participants during the convening.190 (2) Two note takers coalesced their notes
with the flip chart notes into one summary document within the first week after the
event.188,190,191 (3) At the end of the first week after the event, the researcher, PIs, and the two
senior researchers reviewed their own notes and the note takers documents, identifying common
themes via inductive analysis.188,190,191 (4) Within two weeks after the event, the research team
held a subsequent group debriefing discussion to achieve consensus on the list of themes.188,190,191
The research staff brought their individual lists of themes to the group meeting. Each person
read his or her list out loud and the researcher recorded each identified theme. The group then
69
grouped the themes into categories and created a descriptor for each category.188,190,191 (5) The
researchers received feedback from participants on the summary document.188,190,191
VI.D. Focus Group Results
The 32 focus group attendees comprised 22 invited participants and ten project
researchers and staff. Researchers and staff included four focus group moderators, two dedicated
note takers, and four host and support staff. Table 8 describes participant characteristics.
Table 8. Characteristics of 22 Focus Group Participants
Characteristics
Professional Positions
Position type
Tribal
Non-tribal
Academic Disciplines
Case Study tribes represented
Geographic Representation
Indigenous Nation Citizen
Representation
Fields
anthropology, business administration,
economics, education, Indigenous studies,
psychology, public health, medicine, social
work, sociology
Region: States or Countries
US East: New York
US West: Alaska, Arizona, Montana,
Texas, Washington
US Midwest: Michigan, Minnesota,
Missouri, Wisconsin
Non-US: Canada, New Zealand
Region: States or Countries
US West: Alaska, Arizona, Idaho, Texas,
Washington
US Midwest: North Dakota, Wisconsin
Non-US: Canada, New Zealand
Number of participants per position
category
Current or past elected leader: 3
Program director or staff: 4
Inter-tribal entity: 2
Professors: 10
Appointed professionals: 1
Indigenous non-profit board,
director, or staff: 2
Non-profit board, director, or staff: 2
Total number of fields represented
10
2 of 6
Number of participants per region of
residence
1
9
5
7
Number of participants per region of
Indigenous nation citizenship
9
2
5
70
Two of the six tribes sent participants; four tribes were not represented due to scheduling
conflicts for the tribal leader and staff. The 22 participants included current and past tribal
council members, tribal employees, social determinant of health scholars in ten academic fields,
and the W.K. Kellogg Foundation program officer. The research project paid participant travel
costs unless the participants declined the support.
Table 9 on the following page outlines common themes included (1) governance as a
social determinant of health, (2) the role of social networks in determining health, (3) variance of
social determinants of health for off-reservation Indigenous populations, as well as (4) the
intersection of tribal governance, culture, land and natural resources, and healthy communities.
The participants also identified next steps in three categories shown in Table 9: (1) maintaining
and fostering connections, (2) producing written materials or proposing new frameworks, and (3)
sharing resources.
The themes and next steps guided the researcher to a variety of process results. Table 9
describes the SDH and American Indian Nations’ Policy Focus Group outcomes.
71
Table 9. Social Determinants of Health (SDH) and American Indian Nations’ Policy Focus
Group Matrix: Dissertation Outcomes by Discussion Themes and Next Steps
Next Steps
Themes
governance as a social
determinant of health
role of social networks
in determining health
social determinants of
health for offreservation Indigenous
populations
intersection of tribal
governance, culture,
land and natural
resources, and healthy
communities
maintaining and
fostering connections
among attendees and
others
producing written
materials or proposing
new frameworks
sharing resources
among attendees
SDH and Data and
Sovereignty Consensus
Panels gathered a subset
of attendees, some
invitees that were not
able to attend; the
researcher also engaged
via phone, in person, or
over email with some
invitees that were not
able to attend
N/A
Manuscript 2
(Appendix B),
“Opportunities in
Tribal Public Health”
and Manuscript 3
(Appendix C),
“Reclaiming Indigenous
Health”
Data Governance and
Data Sovereignty
Written Products List
NNI researchers
conducted a pilot project
and published a report
on “Residence,
Community
Engagement, and
Citizenship: How do
non-resident tribal
citizens connect with
Native nations?" A
proposal based on the
pilot project is in process
Manuscript 1, “Data
Case Studies,”
Manuscript 2
(Appendix B),
“Opportunities in
Tribal Public Health,”
and Manuscript 3
(Appendix C),
“Reclaiming Indigenous
Health,” Data
Governance and Data
Sovereignty Written
Products List
Attendees submitted
peer-reviewed and other
resources across all social
determinants of
Indigenous health
topics; project staff
collated and included
the resources in the
Health Forum Summary
document
NNI and the University
of New Mexico held the
Social Determinants of
Health - Indigenous
Measures and Off
Reservation Meanings
forum in September
2014
SDH Consensus Panel
gathered a subset of
attendees, some invitees
that were not able to
attend, and others;
72
VII. Social Determinants of Health (SDH) Consensus Panel
The Native Nations Institute convened a consensus panel, the Native Nations Institute
Social Determinants of Health Meeting (SDH Consensus Panel), in Tucson, AZ, February 17 and
18, 2015. The researcher created the SDH Consensus Panel to explore focus group results: two
themes and two suggested next steps. Focus group themes explored included governance as a
social determinant of health and the intersection of tribal governance, culture, land and natural
resources, and healthy communities. The next steps employed were fostering connections
between attendees and producing written products or frameworks. The SDH Consensus Panel
focused on creating consensus among the participants about (1) the limitations of the SDH
framework for Indigenous communities, (2) Indigenizing the WHO SDH framework,43,44 and
(3) Indigenous conceptions of a healthy community. Standard group discussion methods from
social science199 and medicine193,200 guided the researchers in selecting participants, creating
guiding questions, and analyzing the data.
VII.A. SDH Consensus Panel Recruitment
Invitees included ten scholars who were invited to attend or attended the SDH and
American Indian Nations’ Policy Focus Group and who indicated interested in continuing
dialogue on the topic of Indigenous health and social determinants via conversations and emails
with the researcher. Experts were chosen to include scholars that have both academic and
community-based experiences, diversity of disciplines, and have an interest in generating ideas
and written products within the topic area.189,193 The invitation issued two to three months prior
to the meeting included the dates and location of the consensus panel and detailed the goals as
73
generation of ideas addressing the three lines of inquiry above and producing a paper on the
results of that discussion. The research project offered to pay participant travel costs and a $1000
consulting fee.
VII.B. SDH Consensus Panel Methods
The researchers selected a consensus group format to gather experts together with the
researchers to co-produce knowledge in the form of a peer-reviewed publication in a field where
little research or publication had occurred.189,193,194,200 The researchers decided that the synergies
occurring through conversation would produce a richer consensus panel outcome than using
individual consensus survey methods.189,193,194,200 The researcher used three documents to guide
the consensus process: (1) an agenda (Appendix J), (2) guiding questions and prompts in
(Appendix K), and (3) a paper outline in (Appendix L).189
SDH Consensus Panel Planning
The researcher drafted the agenda (Appendix J) and guiding questions included
(Appendix K) with prompts and the paper outline (Appendix L) to focus on specific topics and
guide the consensus panel process.189,193,194,200 During a series of planning meetings and emails,
the researcher, PIs, and senior researchers revised the guiding questions and outline for clarity
and to gather input in the three consensus panel focus areas: (1) the limitations of the SDH
framework for Indigenous communities, (2) Indigenizing the WHO SDH framework,43,44 and
(3) Indigenous conceptions of a healthy community. Other Native Nations Institute program and
administrative staff reviewed the outline and guiding questions document, providing written and
verbal feedback at a planning meeting to improve clarity and reduce unintended
74
interpretations.189 The researcher finalized the documents and the research team approved the
documents at a planning meeting.
One week prior to the event, participants were emailed the agenda (Appendix J), a
participant list, final logistical details, the focus group summary, and the draft paper outline
(Appendix L) on Indigenous health and social determinants. Upon arrival at the event,
participants were provided a folder containing the same documents printed on paper.
SDH Consensus Panel Convening
The agenda (Appendix J) structured the consensus panel to allow time for participants to
progress through the five steps of group discussion as presented by Finch and Lewis (2003):
forming, storming, norming, performing, and adjourning.189 The consensus panel began with a
forming session that included dinner where the researcher provided a welcome, overview of the
schedule and folder contents, and ground rules for speaking, listening, and sharing.189 Next, for
storming, participants introduced themselves and had the dinner to connect with each other.189
The researcher facilitated discussions over the daylong event. Participants sat at a “U”
shape table to allow viewing the screen and promote conversation.189,190 Snacks and refreshments
were provided throughout the day as well as breakfast and lunch.189,190 Participants indicated that
they would like to speak by raising their hand; the facilitator kept a list of those who would like
to speak and also asked questions of those who were quieter at first from the list of guiding
prompts.189,190
The convening began with norming session that included a slide presentation by the
researcher on the WHO social determinants of health framework.189 The researcher then
commenced the performing session by facilitating discussion via the guiding questions and paper
75
outline.189 The day closed with an adjourning discussion of next steps, target journals, and
potential roles for the panel participants during the paper writing process.189
SDH Consensus Panel Documentation
The graduate researcher typed up hand written notes within five days of the consensus
panel. Over the next month, a research assistant added her own notes and reviewed the recorded
conversation for accuracy. A senior researcher then reviewed the notes, compared against her
own, and edited for consistency. The researcher finalized and sent the notes to the consensus
panel participants for review and editing six weeks after the panel met. No panel participants
provided any content edits. This method of multiple note takers, coalescence of notes,
comparison with recordings, and submission to participants for editing is known to increase
reliability.188,190,191
VII.C. SDH Consensus Panel Coding and Analysis
The summary document was not a product for analysis, rather a tool of recording what
occurred. Analysis of the consensus panel topics and consensus occurred through an iterative
process of discussion during the consensus panel and via follow up email, phone, and
videoconference conversations with consensus panel participants. The researcher led this process
with participation from all consensus panel participants.
The researcher used four approaches to increase the reliability of the documentation and
the validity of the analysis: (1) the researcher recorded the co-editing and co-production of the
paper outline during the consensus panel via a computer projected onto a screen;190 (2) the
researcher used a variety of methods to communicate with and solicit consensus panel input
76
including written comments within documents, individual and group emails, and individual and
group conversations over phone and videoconferencing allowed for a variety of consensus
mechanism;191 (3) two note takers coalesced their notes and the audio recordings into a reference
document for participants; (4) the panel held ongoing conference calls and email
communications to produce the consensus paper.193,200,201
The researcher edited and cleaned the consensus paper outline and submitted it to the
panel for review and editing the day after the consensus panel convened, with edits, comments,
and indications of which sections panel members wanted to write due two weeks later. The
researcher received all edits by the deadline. The researcher then coalesced feedback and emailed
it to the group. As agreed at the end of the convening, a self-selected sub-group led by the
researcher drafted an introduction and circulated it to the group within one month of the
convening. The group then met via conference call on March 23, May 8, June 22, and August
10, 2015 to further refine the paper outline, a table, and an image. When panel members could
not attend, the researcher followed up via email or phone individually to gather feedback. At the
August 10 meeting the group decided that the researcher would draft the remaining paper
sections, soliciting group feedback on areas of uncertainty and as she refined the table and image.
The group would then reconvene in January 2016 to revise and edit the draft and finalize the
document for submission to a peer-reviewed journal. This iterative method of consensus paper
production resonates with Indigenous and mainstream methods of co-production of
knowledge.155,156,189,193,200
77
VII.D. SDH Consensus Panel Results
Table 10 describes the 8 participants who represented the 8 fields; one participant was
formerly a tribal leader and held many other program leadership positions at her tribe.
Table 10. Characteristics of 8 SDH Consensus Panel Participants
Characteristics
Professional Positions
Position type
Tribal
Non-tribal
Academic Disciplines
Geographic Representation
Indigenous Nation Citizen
Representation
Fields
business administration, education, political
economics, Indigenous studies, public health,
public policy, social work, sociology
Region: States or Countries
US East: New York
US West: Alaska, Arizona, New Mexico,
Washington
US Mid-West: Missouri
Region: States or Countries
US West: Alaska, Arizona, New Mexico,
Washington
Number of participants per position
category
Current or past elected leader: 1
Inter-tribal entity: 1
Professors: 4
Appointed professionals: 2
Total number of fields represented
8
Number of participants per region of
residence
1
6
1
Number of participants per region of
Indigenous nation citizenship
9
This meeting resulted in Manuscript 3 (Appendix B). See section IX.C. Specific Aim 3:
Manuscript 3 below for a detailed description of results. The SDH Consensus Panel led the
researcher to conceptualize the Manuscript 2 (Appendix C) on opportunities in tribal public
health. See section IX.B. Specific Aim 2: Manuscript 2 below for summary results from the
manuscript.
78
VIII. Data and Sovereignty Consensus Panel
The Native Nations Institute convened the Native Nations Institute Data and Sovereignty
Meeting (Data and Sovereignty Consensus Panel) in Tucson, AZ, March 3 and 4, 2015. The
researcher created the SDH Consensus Panel to explore two of the focus group themes in depth
and address two suggested next steps. Focus group themes explored included governance as a
social determinant of health and the intersection of tribal governance, culture, land and natural
resources, and healthy communities. The next steps employed were fostering connections
between attendees and producing written products or frameworks. The Data and Sovereignty
Consensus Panel focused on creating consensus among the participants to (1) identify tribes’
governance, infrastructure, and capacity needs as they strategically engage with data and (2)
create a list of proposed written products for the panel and others to author to increase the
number of publications discussing data sovereignty and data governance for US Indigenous
nations. Standard group discussion methods from social science199 and medicine193,200 guided the
researchers in selecting participants, creating guiding questions, and analyzing the data.
VIII.A. Data and Sovereignty Consensus Panel Recruitment
Invitees included select scholars who have published works on tribal demographic data or
conducted tribal demographic data collection projects.189,193 Purposive sampling targeted four
experts to represent diversity of scholarly fields and academia (one invitee), experience with
federal and tribal data for over 20 years to provide historical perspective (one invitee), and tribal
program staff with both master’s level academic training and on-the-job experience gathering
tribal socio-economic data (two invitees).189,193
79
The invitation issued three to four months prior to the meeting included the dates and
location of the consensus panel and detailed the goals as generation of ideas regarding what
tribes’ governance, infrastructure, and capacity needs as they strategically engage with data and
producing a paper and a list of written products based on the results of that discussion.
VIII.B. Data and Sovereignty Consensus Panel Methods
The researchers selected a consensus group format to gather experts together with the
researchers to co-produce knowledge about tribes’ needs when strategically engaging with data in
the form of a peer-reviewed publication in a field where little research or publication had
occurred and a list of future publications to further impact the field.189,193,194,200 The researchers
decided that the synergies occurring through conversation would produce a richer consensus
panel outcome than using individual consensus survey methods.189,193,194,200 The researcher used
three documents to guide the consensus process: (1) an agenda (Appendix M), (2) guiding
questions and prompts (Appendix N), and (3) a paper outline (Appendix O).189
Data and Sovereignty Consensus Panel Planning
The researcher mentored a senior researcher in the consensus panel process. The senior
researcher mentee in consultation with the researcher drafted the agenda (Appendix M) and
guiding questions with prompts (Appendix N) and the paper outline (Appendix O). These
documents served to focus on specific topics and guide the consensus panel process.189,193,194,200
During a series of planning meetings and emails, the researcher, PIs, and senior researchers
revised the guiding questions and outline for clarity and to gather input on the consensus panel
focus of (1) identifying tribes’ governance, infrastructure, and capacity needs as they strategically
80
engage with data and (2) creating a list of proposed written products for the panel and others to
author to increase the number of publications discussing data sovereignty and data governance
for US Indigenous nations. Other Native Nations Institute program and administrative staff
reviewed the outline and guiding questions document, providing written and verbal feedback at a
planning meeting to improve clarity and reduce unintended interpretations.189 The senior
researcher mentee created final drafts, the researcher finalized the documents, and the research
team approved the documents at a planning meeting.
One week prior to the event, participants were emailed the agenda (Appendix M), the
draft paper outline (Appendix O), a participant list, and final logistical details. Upon arrival at
the event, participants were provided a folder containing the same documents printed on paper
plus three papers. The papers included an opinion editorial on tribal data sovereignty by two
researchers participating in the panel,202 a report on one panel participant’s tribal data work,203
and a draft of Manuscript 1 (Appendix A). The papers served to norm the group toward the
topics of discussion.189
Data and Sovereignty Consensus Panel Convening
The agenda in (Appendix M) structured the consensus panel to allow time for
participants to progress through the five steps of group discussion as presented by Finch and
Lewis (2003): forming, storming, norming, performing, and adjourning.189 The consensus panel
began with a forming session that included dinner where the researcher provided a welcome,
overview of the schedule and folder contents, and ground rules for speaking, listening, and
sharing.189 Next, for storming, participants introduced themselves and had the dinner to connect
with each other.189
81
The senior researcher mentee facilitated discussions over the daylong event; the
researcher provided guidance to the mentee during breaks on how to direct conversation to
follow the agenda, additional prompts, and tips on note taking on the computer projected notes
viewable to the consensus panel participants, and also spoke up to guide the conversation at
points. Participants sat at a “U”.189,190 Snacks and refreshments were provided throughout the day
as well as breakfast and lunch.189,190 Participants indicated that they would like to speak by raising
their hand; the facilitator kept a list of those who would like to speak and also asked questions of
those who were quieter at first from the list of guiding prompts.189,190
The convening began with norming session that included a discussion of the draft version
of Manuscript 1 (Appendix A).189 The discussion included the history of data on Indigenous
people, communities, and nations in the US, its current state, and suggestions for improving data
for Indigenous peoples, communities, and nations.189 The researcher then commenced the
performing session by facilitating discussion via the guiding questions and paper outline.189 The
day closed with an adjourning discussion of next steps, target journals, and potential roles for the
panel participants during the paper writing process.189
Data and Sovereignty Consensus Panel Documentation
The graduate researcher typed up hand written notes within five days of the consensus
panel. Over the next month, she coalesced her notes with a senior researcher and research
assistant and the recorded conversation. The research assistant edited the notes for clarity and
formatting. The senior researcher then reviewed the notes, compared against her own, and edited
for consistency. The researcher finalized the notes and the senior researcher mentee then sent the
notes to the consensus panel participants for review and editing six weeks after the panel met. No
82
panel participants provided any content edits. This method of multiple note takers, coalescence
of notes, comparison with recordings, and submission to participants for editing is known to
increase reliability.190-192
VIII.C. Data and Sovereignty Consensus Panel Coding and Analysis
Researchers used an iterative process of discussion about tribes’ needs when strategically
engaging with data during the panel and follow up email, phone, and videoconference
conversations with panel participants to analyze the panel topic and reach consensus. The
researcher used inductive analysis when reviewing the notes taken on the projector during the
gathering and the consensus panel summary to assess recommendations for a set of papers and
other written products on Indigenous data sovereignty and data governance in the US that
appear as the Indigenous Data Sovereignty and Data Governance Written Products (Appendix
P).190-192 The consensus panel subsequently convened via email, phone, and videoconference
conversations to further refine the documents and publications plan. The researcher and senior
researcher mentee led this process with participation from all consensus panel participants.
The researcher used four approaches to increase the reliability of the documentation and
the validity of the analysis: (1) the senior researcher mentee recorded the co-editing and coproduction of the paper outline during the consensus panel via a computer projected onto a
screen;190 (2) the researcher and senior researcher mentee used a variety of methods to
communicate with and solicit consensus panel input including written comments within
documents, individual and group emails, and individual and group conversations over phone and
videoconferencing allowed for a variety of consensus mechanism;191 (3) three individual’s notes
were coalesced with the audio recordings into a reference document for participants; (4) the
83
panel held ongoing conference calls and email communications to produce the list of written
products, decide on the priorities, continue work on Manuscript 1 (Appendix A), and continue
writing the consensus paper.193,200,201
The senior researcher mentee edited and cleaned the consensus paper outline, the
researcher finalized the outline, and the document was submitted to the panel for review and
editing the within a week after the consensus panel convened.189,193,200 Edits, comments, and
indications of which sections panel members wanted to write were due two weeks later. All edits
were received by the deadline. The senior researcher mentee then coalesced feedback, the
researcher finalized the document, and the document was emailed to the group. As agreed at the
end of the convening, a sub-group led by the researcher drafted an introduction and circulated it
to the group within one month of the convening. The group then met via conference call on
April 6, May 26, and August 4, 2015 to further refine the paper outline and draft and discuss
Manuscript 1 (Appendix A). When panel members could not attend, the researcher and senior
research mentee followed up via email or phone individually to gather feedback. At the August 4
meeting the group decided that the researcher, the senior researcher mentee, and two consensus
panel participants would devote the fall to finalizing Manuscript 1 (Appendix A) for journal
submission. The group would then reconvene in January 2016 to revise and edit the draft
consensus panel paper and prioritize other documents from the Indigenous Data Sovereignty and
Data Governance Written Products (Appendix P) for writing and publication. This iterative
method of consensus product production resonates with Indigenous and mainstream methods of
co-production of knowledge.155,156,189,193,200
84
VIII.D. Data and Sovereignty Consensus Panel Results
Table 11 details the 9 participants representing the fields of education, political
economics, public health, and sociology; two participants were currently tribal program staff. The
researcher created a list of Indigenous Data Sovereignty and Data Governance Written Products
(Appendix P). The first peer-reviewed manuscript in the series appears as Manuscript 1
(Appendix A). Section IX.A. Specific Aim 1: Manuscript 1 provides a summary of the
manuscript results.
Table 11. Characteristics of 9 Data and Sovereignty Consensus Panel Participants
Characteristics
Professional Positions
Position type
Tribal
Non-tribal
Academic Disciplines
Academic Disciplines
Geographic Representation
Indigenous Nation Citizen
Representation
Fields
business administration, justice and social
inquiry, political economics, public health,
social work, sociology
Region: States or Countries
US West: Alaska, Arizona, New Mexico,
Washington
US Mid-West: Missouri, South Dakota
Region: States or Countries
US West: Alaska, Hawaii, Texas
US Mid-West: South Dakota
Number of participants per position category
Current or past elected leader: 1
Program director or staff: 2
Professors: 3
Appointed professionals: 2
Consultants: 1
Total number of fields represented
6
Number of participants per region of
residence
7
2
Number of participants per region of
Indigenous nation citizenship
3
1
85
IX. Results by Specific Aims
IX.A. Specific Aim 1: Manuscript 1
To describe the state of population data for US Indigenous nations and benefits of engaging with
data, data sovereignty, and data governance for US Indigenous nations.
Manuscript 1 (Appendix A) addresses data limitation challenges. One tribe, The Ysleta
del Sur Pueblo (YDSP) agreed to co-author a peer-reviewed publication describing the tribe’s
longitudinal experience with tribally collected socio-economic and demographic data. YDSP, a
Puebloan culture, is located near El Paso, TX. In 2014, the Pueblo had over 3000 citizens, with
1728 living on or near the reservation.204
In an effort to provide diversity to the discussion, the researcher sought two other
examples of tribally controlled demographic and socio-economic data collection, analysis, and
application to inform policies and programs. Criteria for selection included being a federally
recognized American Indian nation with federal Indian reservation lands located in another
geographic region of the US, culturally distinct from the Puebloan traditions of YDSP, larger
tribal enrollment, and different data collection methodology than YDSP. Non-federally
recognized American Indian nations and federally recognized American Indian nations without
federal Indian reservation lands were excluded to be consistent with the original dissertation
research recruitment criteria.
The Cheyenne River Sioux Tribe Tribal Ventures Voices research project met the
inclusion criteria and the tribe agreed to co-author the publication. The Cheyenne River Sioux
Reservation “is home to the Cheyenne River Sioux Tribe’s four Ospaye (bands) of the Great
Sioux Nation: the Mnicoujou, the Siha Sapa, the Oohe Numpa, and the Itazipco.”205 The tribe
86
had 19,765 enrolled tribal citizens in 2015.206 In 2014, 10,564 people lived within the Cheyenne
River Sioux Reservation boundaries, 8,556 were American Indian.206 In contrast to the urban
location of YDSP, the Cheyenne River Sioux Reservation covers a rural and remote area of
almost 3 million acres.206 On average, fewer than 2 people reside in each square mile of the
reservation.206
The researcher created the manuscript outline, interviewed and requested information
from co-authors, and drafted and finalized the manuscript. YDSP and Cheyenne River coauthors drafted sections for the case studies, edited the final manuscript draft, and facilitated
tribal approval for submission to a peer-reviewed journal. The full methods for collection and coproduction of Manuscript 1 are in the paper (Appendix A). The co-authors from the two tribes
attended the Data and Sovereignty Consensus Panel.
The literature review conducted as the foundation for this work revealed that tribes face
six major challenges when using currently available data to inform policy and resource allocation:
scarcity, poor quality, sectoring, irrelevance, mistrust, and external
control.18,34,54,61,62,103,104,106,107,118,119,207-209 Some tribes have moved to strategically planning for data
collection, analysis, and use. The two case study tribes diverge in terms of financial investment,
capacity development, information collected, and implementation, yet each illustrates a tribe’s
successful data initiative and highlights the importance of partnerships, community engagement
and education, and the importance of information for internal decision making and influencing
external policies and funding.
The three themes that emerged during this two case study process were: (1) strategically
responding to data challenges, (2) engaging with the community to educate leaders and citizens
about data and gather input for defining variable, the data collection process, and the analysis
87
and use of data, and (3) using data to inform policy decisions and resource allocation and
strengthen Indigenous nation sovereignty.
IX.B. Specific Aim 2: Manuscript 2
To outline the history and current state of tribal public health relative to other US public health
systems.
Indigenous peoples are the architects of interconnected frameworks and ways of life that
kept people healthy.157,159-161,210 Pre-contact with colonizing societies, these frameworks informed
systems that were tribal public health.161 Colonialism eroded many of these systems.157,159-161
Rebuilding self-determined tribal public health systems at the intersection of Indigenous and
mainstream public health practice offers a path forward for protecting and promoting the health
of Indigenous communities and families.61,62,67
In recognition of the federal government’s government-to-government relationship with
tribes, the definition of public health authority set forth in 2000 included federally recognized
American Indian tribes in addition to federal, state, territorial, and local governments; tribes can
make and enforce public health laws, assess, assure, and set policy to protect and promote healthy
communities.55 Yet tribes have not been included in many public health initiatives.62,67 Federal
and other funds have not been invested in tribal public health systems in ways similar to
investments made in federal, state, and local public health authorities,62,67 resulting in
infrastructure and capacity inequalities.56,61,67,211 In general, efforts to improve and coordinate
national public health policies and practices do not include tribal public health
authorities.61,62,64,65,67
88
Since the release of the Institute of Medicine’s (IOM) 1988 report, The Future of Public
Health,65 the field of US public health has been working diligently both to create a framework
for public health function and services and to build effective and coordinated governmental
public health systems.64,67 Despites tribes possessing the same public health authority as other US
governments, the IOM’s follow-up 2002 report The Future of the Public's Health in the 21st
Century failed to address tribal public health authorities as part of the larger national public
health system.64 The exclusion of tribes from national public health improvements not only
results in infrastructure and capacity disparities between tribal and other public health
authorities,61,67 but also threatens the security of US public health.212-214
Public health is a local and a global issue.212-214 Today’s global society ensures that both
communicable and non-communicable diseases spread easily across jurisdictional
boundaries.145,212-215 Tribal jurisdictions often overlap with a number of state and local
jurisdictions,211,216 affecting outbreak response, law enforcement, and services.216 A coordinated
and connected national public health system that fosters collaboration and partnership among all
public health authorities is necessary to protect and promote public health for Indigenous peoples
as well as all US citizens.62,211
The assurance of public health for all in the US depends upon improving tribal public
health capacity and infrastructure. Manuscript 2 (Appendix B) explains the development of
infrastructural inequities and proposes a solution that promotes US public health. The solution is
positioned at the intersection of mainstream public health and Indigenous ways of knowing, and
recommends actions for tribes, the federal government, and others to move toward equity and
bolster tribal sovereignty.
89
Indigenous knowledge systems are holistic, ecological, interconnected, and non-linear.155157,159-161,210
Rebuilding self-determined tribal public health systems offers a path forward for
protecting and promoting the health of Indigenous communities and families.61,62,67,161 But where
do tribes start?
Tribes engage in a variety of efforts to improve public health services, capacity,
infrastructure, and systems. The foundation of such improvements includes comprehensive
community planning: identifying the Indigenous nation’s vision of a healthy society, community,
and families and planning a path to protect and promote community and family health to realize
that vision.217-219 In a survey of tribal health departments, Knudsen et al. found that
“(p)articipants agreed that community health assessments are not just an outcome, but a process.
The process should include the community, specifically in identifying data indicators.”211p17
Therefore, using Indigenous epistemologies and knowledge to guide community-based, nationdriven defining of health and well-being creates the vision and plan that forms the basis for tribal
health governance.217-219 Indigenous nation self-determination underpins and informs tribal
government public health actions and governance of the public health system.62
Over the past fifteen years, U.S. mainstream public health has moved toward an
accreditation process for local, state, tribal, and territorial public health authorities.82 Launched
in 2011, the non-profit Public Health Accreditation Board manages the process and accredits
tribal public health authorities.83 Accreditation moves public health entities toward national
standards, increases accountability and credibility, provides benefits such as assistance with
stronger services and programs and infrastructure improvement, and offers a framework for
assessing public health systems’ performance.83 Accreditation also requires that state, local, tribal,
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and territorial public health authorities partner and work together, increasing coordination and
the strength of the nation’s public health system.83,220
Tribal public health entity readiness for accreditation has not yet been comprehensively
assessed.221 However, national organizations have granted accreditation preparedness funds from
the Centers for Disease Control and Prevention and the Robert Woods Johnson Foundation to
tribes and tribal organizations to prepare tribal public health authorities for accreditation and to
improve tribal public health systems.221 Yet Indigenous nations require more than financial
investment to build infrastructure and capacity.221 During accreditation discussions, tribal leaders,
academics, and other public health professionals have called for an Indigenized public health
framework and strategies to address significant data needs.62
To offer Indigenous nation specific support for public health systems improvements, Red
Star Innovations (Red Star), in partnership with tribes, TECs, and mainstream public health
organizations assessed the feasibility of a tribal public health institute.61 Mainstream public
health institutes operate as non-profits supporting innovation in public health practice and
improving the health of communities through research and convening of public health entities.67
The tribally driven feasibility study confirmed a need for a neutral tribal public health institute to
assist in coordinating a national tribal public health system and working to Indigenize and
improve the current public health framework.61-63
While pursuing accreditation and forming a tribal public health institute may improve
tribal public health systems, infrastructure, and capacity, working to strengthen tribal public
health underscores the importance of tribal self-determination and sovereignty in identifying
tribal public health framework(s) at the intersection of Indigenous knowledge and mainstream
public health practice.62,67
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Today tribes engage in rebuilding their tribal public health systems both within the
federal paradigm availing themselves of options under ISDEAA and outside the federal
framework through sovereign, self-determined actions.50,62,67 As tribes rebuild, they do so in
within a fractured system with poor infrastructure.62,66,67,211 A coordinated approach, internally
improving tribal public health and externally strengthening the US public health system is more
effective than investing in thousands of unconnected and uncoordinated programs.64,65,145,222 IX.C. Specific Aim3: Manuscript 3
To elucidate the assumptions and applicability of the social determinants of health framework to
Indigenous health contexts.
The positionality of the four researchers and four invited experts who participated in a
SDH Consensus Panel influenced the construction of the thoughts in this Manuscript 3
(Appendix C).196,223-225 Diverse by culture, academic discipline, and life experiences, the eight
participants represented five US Indigenous nations, allied non-Indigenous peoples, and the
academic disciplines of education, justice and social inquiry, political economics, public health,
social work, and sociology. The ideas in Manuscript 3 emerged from the convergence of each
participant’s contribution based on their position in the world and the group.196,223-226 The results
reflect different perspectives formed into shared ideas and epistemological pluralism of
disciplines.196,223-226
The consensus panel results fall into two categories: (1) a comparison of Indigenous
knowledge and underlying Western world views in the WHO social determinants of health
framework43,44 and (2) a schematic for categorizing the determinants of health and well-being for
US Indigenous nations.
92
The panel agreed that the efforts to Indigenize the WHO social determinants
framework43,44 do not interrogate the assumptions that undergird the model. Thus, assumptions
must be acknowledged for the framework to inform policies for health equity in Indigenous
communities. Table 12 identifies assumptions in the literature and by the panel participants.
Table 12. Determinants of Health: Indigenous Knowledge and Western World Views
Indigenous Knowledge of Determinants, Health, and
Well-being
Indigenous voice
Action oriented
Process oriented
Holistic
Interconnectedness of all determinants
Focused on the collective, and the individual’s role in
the collective
Aligns movement with the community’s own vision of
a healthy, sustainable society
Allows comparisons between Indigenous populations
Asset based
Community and individual level indicators track
progress toward community’s goals
Incorporates history and spiritual place
Considers future generations and ancestors,
intergenerational, including a role for each community
member
Connects with values, language, culture, land, place,
stewardship
Metrics and measurements reflect Indigenous
conceptions of health and society, including
Indigenous community-specific economic activities,
e.g., individual or small business art production and
sales; tourism
Outcomes include multiple dimensions of health, such
as cultural and spiritual
Outcomes include human and non-human health,
such as land, animals, language
Lack of data available at the nation, reservation, and
tribal citizen levels; Indigenous data need to reflect
Indigenous conceptions of health, well-being, and
determinants
Flexible for application in many communities
Non-Indigenous Knowledge Base of the WHO
Social Determinants of Health Framework
Voice of the “other”
Descriptive
Prescriptive
Linear
Distinctions made between social, individual,
biological and genetic, physical, and other
determinants
Focused on the individual
Focuses on “closing the gaps” between subpopulations
and the general or dominant population
Disease and deficit based
Community and population health defined by
aggregate measures of individuals’ health
Decontextualized in time and spiritual space
Lacks relational considerations among people and
between people and non-human world
Determinant indicators and health outcomes primarily
Western-defined disease prevalence and incidence
rates, economics, education, and other measures
Health outcomes primarily conceived as physical and
mental
Outcomes only focused on human characteristics
Access to reliable data
Broadly applicable to all communities
93
Generally, the panel argued that the WHO framework even when adapted to Indigenous
circumstances continues to use Western ways of knowing regarding determinants, health, and
well-being. The panel concluded that a holistic framework focused on community-based
conceptions of health and well-being will allow for including the appropriate array of health and
wellness determinants for each Indigenous nation.
The panel decided that simply modifying the framework employing Indigenous
knowledge was not adequate to inform Indigenous nation policy and action to restore health and
wellness in Indigenous communities. While the panel was reluctant to propose an Indigenousspecific framework, the participants set forth a more holistic schematic for categorizing health
and well-being determinants that could apply to any community. The underlying knowledge and
epistemologies would reflect the nation or community’s ways of knowing, and as such,
conceptions of health and well-being could then inform how health, well-being, and
determinants are measured, assessed, and compared.
The panel categorized determinants of health and well-being to fall into three categories
as shown in Figure 4: (1) broad determinants of health that affect Indigenous and nonIndigenous communities; (2) shared determinants of health among Indigenous communities or
among communities in a certain geography or of a certain culture, e.g., US communities, US
Midwest communities; and (3) unique determinants of health evident in one or a few Indigenous
or other communities. The dashed circle in Figure 4 depicts how the WHO social determinants
framework only operationalizes social determinants in relation to physical and mental health.
The schematic in Figure 4 provides space for a variety of determinants and a holistic concept of
health that may include social, cultural, emotional, and other types of health as determined by
the community.
94
Unique determinants are particular to each Indigenous nation such as culture, uses of
natural resources for health and healing, traditional practices and ceremonies, and language.
Shared determinants include resilience, relationships with ancestors and future
generations, the interconnectedness of determinants and health and well-being, relationality, an
orientation toward the collective, the individual’s role in the collective, interdependence,
importance of and relationships with ancestral and other lands, place, and space, significance of
elders, the intergenerational transmission of traditional knowledge, the changing meaning of
health over the life course, nation self-determination and sovereignty, and colonization.18-22,24-26,2830,46,134-136
Figure 4. Determinants of Collective Health and Well-being in US Indigenous Communities
95
Broad determinants include those identified by the WHO and others as playing a role in
creating the environments where people grow, live, and age, such as governance, community
cohesion, jobs, health and other services.43,44,133
Figure 4 also elucidates the relationships between the three categories and health and
well-being viewed holistically. Unique and shared determinants may overlap. A shared
environmental context may influence health and healing in many nations that exists in a shared
ecosystem, e.g. sage grows in the desert, and many but not all Indigenous nations use sage.
Cultures or languages are shared among a few nations, but not all. Shared and broad
determinants also overlap. Mainstream broad determinants, e.g., governance, community
cohesion, jobs, health and other services, may be conceptualized and measured differently for
Indigenous communities.
The framework in Figure 4 is not prescriptive. Rather, it represents a process that
incorporates partnerships and collaborations to identify unique, nation-based determinants, to
define shared determinants that drive comparison and innovation among Indigenous nations,
and to employ or adjust broad determinants to allow comparisons across Indigenous nations or
with other US populations. The schematic in Figure 4 utilizes Indigenous knowledge and
epistemologies to guide, or co-create with Western ideas, community-based, nation-driven
theories of health and its determinants.
96
PROCESS, CHALLENGES, AND CHANGES
This dissertation originally began with different specific aims and hypotheses, as
presented below. The evolution of the specific aims resulted from researcher reflection of the
absence of data sovereignty and data governance.
The overarching research question was: What actions can Indigenous governments and
organizations take to improve the health and wellness of Indigenous communities, families, and
children? Initially, the dissertation research was designed to explore this question through
focusing on Indigenous governance conditions that exist in situations of lower infant mortality.
Original Specific Aim 1
To use qualitative comparative analysis to identify the relationship between American Indian
nations’ governance factors and infant mortality.
Hypothesis: Causal configurations for low infant mortality rates and low post-neonatal
infant mortality rates (at or below the Indian Health Service (IHS) average and/or the US all
races rate) will include conditions such as high use rates of federal self-determination
opportunities, high practice of practical self-rule, high capacity governance institutions, and high
government legitimacy with American Indian nation citizens.
Original Specific Aim 2
To identify and describe governance conditions linked to lower infant mortality rates in the
sample.
97
Original Specific Aim 3
To report and discuss governance factors identified during the analysis that are amenable to
American Indian nation governance actions to improve infant mortality rates.
Work toward Aim 1 included literature reviews, case studies with six federally recognized
American Indian nations, and convening a focus group and two consensus panels comprised of
Indigenous and non-Indigenous experts with tribal, intertribal, and (inter)national experience in
the convening topics. There were significant challenges in completing Aims 1 and 2. The
challenges encountered have broad governance implications for protecting, promoting, and
sustaining healthy Indigenous communities
Systematic data issues impeded the analysis initially conceived for Aim 1 and 2.
Comparability of data across participating tribes arose as the primary challenge. Both the data
available and the metrics used varied across tribes. All tribes gathered some data and all relied on
county, state, and federal data that did not provide tribe specific nor reservation-based
information. Some tribes had clear protocols for sharing information internally and externally,
while others lacked such protocols. The researcher requested data documenting infant mortality
to child health outcomes, such as natality and maternal outcomes; breast feeding rates;
hospitalizations; Special Supplemental Nutrition Program for Women, Infants, and
Children (WIC) program data and outcomes; and Government Performance and Results Act
(GPRA) reporting data. In many cases, tribes did not possess or have access to this data. When
data were provided, the information was not comparable preventing direct, tribal-level
comparative analysis and application of Qualitative Comparative Analysis approach.
98
Drawing on conversations in 2010 to 2013 with the six participating tribes during
recruitment, IHS statisticians and area staff, tribal epidemiology center staff, and professionals in
public health, the researcher expected to be able to obtain tribal-specific infant mortality rates or
child health outcomes from tribes or IHS. The researcher understood that aggregation across a
decade or other time periods to account for small population numbers may be necessary.
However, collecting such data proved challenging. No tribe in the group of six had infant
mortality data nor could the tribes obtain tribe specific data from IHS or the state vital statistics
offices. The researcher then sought perinatal data, adolescent suicide, and adult morbidity and
mortality rates. These requests similarly did not yield tribe specific data comparable across sites.
All six nations did submit a wide range of health data, e.g., diabetes rates, breast feeding
rates, cancer rates, GPRA, and WIC enrollment data. But the data could not be compared. One
tribe reported diabetes prevalence rates, another reported raw numbers for diabetes cases with no
denominator to determine rates, while another reported prevalence of blood sugar levels within
three categories (high, mid, low).
Many tribes lack a mechanism or process for obtaining tribe-specific data from IHS. IHS
collects and aggregates data by service unit not tribal affiliation. For those tribes that manage
health services, they lacked the resources to gather data themselves as the federal mandate to
collect that data does not fund such collection.
These challenges resulted in no comprehensive knowledge, analyses, or use of available
data for this dissertation, or in general. In response to the lack of comparable data across the six
tribes, the researcher searched for other data sources. Comparable outcomes data were only
available by region as reported by the IHS’ Regional Differences in Indian Health 2002-2003 from
1999-2001 and in the June 2014 supplement to the American Journal of Public Health with data
99
ranging from 1990-2009.4,5 The six tribes participating in this case study research were located in
four regions for each of the available data sources, limiting the outcome variability to four, which
does not provide enough variability in the outcome for a Qualitative Comparative Analysis.173-175
These severe limitations in the outcomes data precluded the originally envisioned analysis.
Despite these challenges, the site visits produced insights into opportunities for
governance actions to improve community health. Discussions of the social determinants of
health with tribal health and other program professionals, tribal leaders, and others affected the
researcher’s thinking about the role of governance in promoting community, family, and child
health. Most professionals at the six tribes were aware of the potential impact of governance on
health, beyond the health care system. All six tribes invested in youth programs to support
education and convey culture. The tribes understood these government-funded programs as
governance efforts to improve the health and well-being of their citizens through action on the
social determinants of health.
Perhaps most important, the interactions with the six participating tribes precipitated a
rethinking of the meaning of health itself: what is a healthy community or society? And how would
the answer to the question within an Indigenous context change the determinants and outcomes?
How then should the determinants and healthy community outcomes be measured and assessed?
The discussions of reexamining definitions of healthy communities for Indigenous
nations with the six tribes also confirmed and provided context for the previously noted
challenges with obtaining comparable data. As a result, the dissertation research explored the
impact of data availability and tribal capacity to manage data on the development and
implementation of realistic strategic visions for healthy communities, on the design of socialdeterminants-related solutions to health challenges, and on the ability of tribes to effectively
100
articulate their own conceptions of health and health care. Health priorities are difficult to
identify without reliable data. Effective tribal public health and health-care policy, including
assessment of social determinants requires reliable data; obtaining reliable data should be a key
governance priority.
The six tribes participating in this research recognized the importance that strategic and
rigorous health and other data collection in order to create and sustain healthy communities.
One tribe annually collects socio-economic data for its enrolled tribal citizens that the economic
development department (EDD) analyzes. The EDD director voiced concern to the researcher
that the tribe similarly needed to improve health data availability and quality. At another tribe,
the health director indicated the tribe’s interest in obtaining data management software to allow
linking data across sectors.
As discussion continued with the six participating tribes and during the focus group,
three distinct but related lines of inquiry emerged. While not anticipated in the dissertation
proposal, they directly reflect field experience and extended dialogue with professionals working
in this arena. Several core questions need to be answered before the analyses originally envisioned
can occur. This process led to the revision of the dissertation’s specific aims to address three of
these core questions.
101
CONCLUSIONS, FUTURE DIRCTIONS, AND IMPLICATIONS
I. Conclusions and Future Directions
Overall, the dissertation and the three manuscripts contribute to understanding the roles
of Indigenous nation self-determination and sovereignty in defining health to align with
Indigenous philosophies of wellness. Guided by Indigenous-specific determinants of health,
tribes can set community-based, culture-informed methods and metrics for establishing,
monitoring, and assessing public health policies and programs to support healthy communities
and families. This dissertation and the three manuscripts are innovative in discussing the
importance of sovereignty and self-determination in defining and assuring health for US
Indigenous nations, communities, and families.
This research provides insight into opportunities for Indigenous nations’ governance,
government, and self-determination actions as they resume and assume more leadership,
responsibility, and engagement for the health of their communities and families. Research
outcomes, analysis, and interpretation leads to further research questions to inform Indigenous
nations’ sovereign actions as they set policy and allocate resources to protect and promote
community and family health.
In general, more research is needed in four areas to address the work in this dissertation
and the three manuscripts. (1) To establish how tribal leaders, program staff, and citizens define
data sovereignty and data governance for US Indigenous nations, to outline the challenges and
issues tribes face when pursuing data sovereignty and data governance, and to develop and test
models for supporting tribes and building tribal capacity to govern data. (2) To develop and
102
evaluate an Indigenous public health framework. (3) To create and assess models of health
determinants for US Indigenous nations, including broad, shared, and nation-specific definitions
of health, healthy families and communities, and health determinants. (4) To demonstrate and
evaluate alternate ways partnering with federal, state, and local governments with tribes to
improve tribal public health infrastructures and to support tribal data sovereignty and data
governance. The individual manuscript sections below describe in greater detail manuscriptspecific conclusions and recommendations that address these four areas.
I.A. Manuscript 1
Conclusions
Manuscript 1 (Appendix A) provides case examples of the roles that sovereignty and selfdetermination can play in guiding data collection and analysis to inform policy and resource
allocation for Indigenous nations. The YDSP utilized their tribal socio-economic data to detail
citizen need. The US Department of Housing and Urban Development did not award a grant as
the US Census Bureau data did not show that YDSP reservation citizens qualified as low
income. YDSP contested the decision and provided HUD the tribe’s own socio-economic data;
HUD accepted the data and awarded YDSP the grant. The YDSP HUD experience exemplifies
how accurate and timely tribal data enabled the tribe to obtain previously unavailable federal
funds. Cheyenne River’s Ventures research study surveyed for workforce sectors not included in
US Census Bureau data, finding that over 70 percent of adult tribal citizens create traditional arts
and crafts to sell. The data informed tribal government, local non-profit, and grant awards to
develop and provide workforce-training opportunities for tribal citizen artists such as financial
103
planning and small business development. Cheyenne River’s tribal data informed targeted tribal
and other investments in workforce development.
The case studies, though, raise more questions regarding the past, current, and future of
data for tribes. For example, how do US Indigenous nations define data sovereignty and data
governance? What is the current status of health, social services, and related data in tribal
communities? How might tribes collaborate with others–tribes, federal, state, and other entities–
to address data needs while maintaining ownership and control over data? What are successful
methods for engaging and educating the community? And how can data initiatives be funded?
Yet despite the challenges and lingering questions, the case studies illustrate that communitybased, nation-driven strategic data initiatives yield previously unavailable information for policy
decisions and resource allocation.
Recommendations
To address the challenges of data governance and data sovereignty such as defining the
terms for US Indigenous nations, assessing challenges for tribes as they work with data, and
developing successful methods to improve data quality and availability, researchers could utilize
four strategies. These strategies result from the work toward Manuscript 1 (Appendix A) and
from the data and sovereignty consensus panel discussions.
1. Researchers could establish a US Indigenous sovereignty advisory group composed of two
tribal leaders, two tribal program staff or tribal community non-profit staff, three to five
Indigenous demographers, sociologists, and economists, and three to five national
Indigenous non-profit or advocacy groups such as the National Congress of American
Indians, American Indian College Fund, First Alaskans Foundation, and the National
104
Indian Child Welfare Association. The purpose of the advisory group is to both provide
input into the research process and to advocate on behalf of the effort to increase Indigenous
nations’ engagement with data and the concepts of data sovereignty and data governance.
The researchers, with guidance from the advisory group, could draft definitions of data
sovereignty and data governance for US Indigenous based on mainstream definitions and
definitions employed by Indigenous nations in other countries.
2. Researchers could then conduct semi-structured interviews to test the definitions, query for
data challenges and successes, gather feedback on effective community engagement methods,
and solicit ideas on strategies for establishing more effective data partnerships with tribal,
federal, state, and local governments and others. Interviewees comprise tribal leaders,
program staff, federal and other government staff, and other Indigenous advocates recruited
at a large national conference with high attendance from such individuals, such as the
National Congress of American Indians annual or mid-year gathering. This purposive
sampling method has proven effective for similar research recruitment in the past.227 The
interview guide could contain the definitions to test their reliability and validity and
questions challenges tribes face with regards to data governance and data sovereignty, such as
infrastructure and capacity shortfalls, difficulty accessing existing date, and successful data
projects or partnerships.
3. Researchers could analyze the interview results and with the advisory group establish a
research and advocacy plan to address the challenges and share the successes. This plan could
include disseminating and facilitating new strategies for engagement and partnerships
between tribes and other governments and non-profits. Evaluation of the strategies could be
woven into the implementation plan.
105
4. Researchers could work with the advisory group and five to ten tribes to develop a basic set of
5-15 socioeconomic variables, a simple sampling method, an analysis plan, and protocols for
data stewardship. Five tribes at a minimum to ensure variety in the sample based on inclusion
and exclusion criteria, e.g., include tribes from across the US, tribes with varied population
counts. Ten tribes maximum as community-based research processes time for approvals
processes, relationship and trust building, and communication among entities. The intent is
to create a US Indigenous nations census that can be inexpensively implemented and provide
more timely, accurate, and culturally-relevant data, a standard set of questions that can be
comparable across Indigenous nations, and allow tribes to add questions to collect data that
addresses nation-specific concerns. The researchers, advisory group, and tribes will determine
during the process whether or not these initial 5-15 questions replicate or are comparable
with US Census Bureau questions and variables.
I.B. Manuscript 2
Conclusion
Manuscript 2 (Appendix B) demonstrates how self-determined tribal public health
systems can protect and promote the health of Indigenous peoples. In addition, strengthening
tribal public health authorities increases the ability of the US to assure public health for the US
population. Tribal public health authorities along with federal, state, territorial, and local public
health authorities form the network of US public health systems that set policy and assure health
for the US public. A weakness in one part of the system, e.g., tribal public health, may make
assuring public health for the general public more difficult.
106
Recommendation
The primary recommendation resulting from Manuscript 2 (Appendix B) is to develop
and evaluate an Indigenous public health framework at the intersection of Indigenous knowledge
and mainstream public health practices. Researchers could develop a survey of tribal public
health entities querying for input on how tribes utilize Indigenous knowledge in the design and
implementation of their tribal public health entities and suggestions for improving tribal
partnerships and collaborations with other governments and non-profits. To address the difficulty
in gathering broad input and support researchers and tribes could network with current efforts to
build capacity for tribal public health entities to receive accreditation and to support tribal public
health authorities through the creation of one or more tribal public health institutes.67 These
networks can be used to both build credibility for the survey and increase response rates through
updated mailing lists. The survey results could then lead to a larger, multi-tribe, communitybased research project to create an Indigenous public health framework which includes novel
methods for partnering and collaborating with other governments and non-profits that can then
be tested in broader application. This plan could include disseminating and facilitating new
strategies for engagement and partnerships between tribes and other governments and nonprofits. Evaluation of the strategies could be woven into the tribal public health framework
implementation plan.
I.C. Manuscript 3
Conclusion
Manuscript 3 (Appendix C) deconstructs the WHO social determinants of health
framework and offers a schematic that includes broad, shared, and nation-specific community
107
health determinants. The consensus panel agreed that there are critical differences between
Indigenous knowledge concerning health and well-being and Western ways of knowing that
underpin the WHO social determinants of health framework. The panel recommends that
comprehensive community-based, nation-driven reclaiming and defining of Indigenous health
and wellbeing is necessary to create a framework to address the determinants of health and wellbeing in Indigenous communities. An Indigenously-defined health determinants framework will
support capable governance and inform policymaking at tribal, federal, and other levels to realize
healthy Indigenous communities.
Recommendation
The consensus panel was reluctant to prescribe an Indigenous social determinants of
health framework. The panel’s reluctance originated from two concerns: (1) the panel did not
want to restrict such a framework to only the social determinants of health and (2) the panel
believed that creation of such a framework could start with communities and build up, instead of
starting with individual researchers. While the consensus panel participants did not propose an
Indigenous social determinants of health framework, the panel’s directive for future research was
clear: Indigenous nations in partnership with researchers and other Indigenous nations could
create an Indigenous health determinants framework for action. The framework itself must
include more than just social determinants,228 allowing for conceptions of health that include the
interconnectedness of human, land, and wildlife health and determinants of such conceptions of
health. A path forward to creating and testing such a framework includes community-based,
nation-driven research partnerships with 4-6 diverse tribes to define health and its determinants
in the community. This would allow community and academic researcher to create broad,
108
shared, and unique determinants and establish how they relate to community definitions of
health. These finding can form the basis of an Indigenous health determinants framework that
could then be tested for use more broadly in US Indigenous nations.
109
II. Implications for Family and Child Health
In 2014 the US Census Bureau estimated that 31.2% of the US AIAN alone population
were under 18 years old compared to 24% of the total US population.229 Therefore, US
Indigenous nations’ policies, resource allocations, and programs to improve and protect
community health proportionally affect more young families compared to the US government, in
general. Indigenous children and families disproportionately bear the burden of poverty and ill
health.
Dissertation Manuscript 1 demonstrates through two case studies how Indigenous nationdriven demographic and socio-economic data collection, analysis, and application can inform
policy and resource allocation decisions to address the nations’ family and community
development agendas.
Manuscript 2 describes how Indigenous nations’ public health systems lack of
infrastructure compared to federal, state, and local public health systems. The state of tribal
public health systems restricts Indigenous nations’ ability to make informed policy decisions to
promote and protect family and community health.
Manuscript 3 provides compelling evidence of the need for tribes to self-determine health
at the intersection of Indigenous and Western knowledge. Utilizing self-determined conceptions
of health and metrics and measurements to make informed policy and resource allocation
decisions enhance Indigenous nations’ abilities to improve community health through
governance and public health, creating healthy Indigenous children and families.
110
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APPENDICES
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Appendix A. Manuscript 1
125
Title: Data as Strategic Resource: Self-Determination, Governance, and the Data Challenge for
US Indigenous Nations
Short Title: Data as a Strategic Resource
Key words: American Indian, Alaska Native, Indigenous, data, sovereignty, governance
Academic discipline area: sociology, public health, public policy
About the Authors
Stephanie Carroll Rainie, MPH
Corresponding Author
[email protected]
520-626-2969
Associate Director and Senior Researcher
Native Nations Institute
Udall Center For Public Policy
University of Arizona, Tucson
Stephanie Carroll Rainie is associate director, manager - Tribal Health Program, and senior
researcher with the Native Nations Institute and assistant director, Center for Indigenous
Environmental Health Research at The University of Arizona. She is a doctoral candidate at The
University of Arizona’s Mel and Enid Zuckerman College of Public Health.
Jennifer Lee Schultz, PhD
[email protected]
(520) 333-9214
Senior Researcher
Native Nations Institute
Udall Center For Public Policy
University of Arizona, Tucson
Jennifer Lee Schultz is a senior researcher with the Native Nations Institute at the University
of Arizona. She is a Social Network Analyst by training, and holds a PhD in Sociology from the
University of Arizona.
Nancy Lynn Palmanteer-Holder, MEd
[email protected]
(509) 322-7718
Lecturer/Consultant
School of Social Work/Foster Business School
University of Washington
Nancy “Lynn” Palmanteer-Holder is a citizen and former Tribal Leader of the Confederated
Tribes of the Colville Reservation-Washington State; currently a Lecturer at University of
126
Washington’s School of Social Work and Consultant to Foster School of Business. She is a doctoral
candidate of Social Policy at UW School of Social Work.
Eileen Briggs, MEd
[email protected]
(605) 964-2016 or (605) 200-0659
Executive Director
Cheyenne River Sioux Tribal Ventures
Eileen Briggs is a member of the Cheyenne River Sioux Tribe. Briggs received her Bachelor’s in
Human Services and Communications and Master’s in Education from the University of Minnesota.
Her background is in program design and implementation; project management and community
development.
Patricia Riggs, MBA
[email protected]
(915) 588-3628
Consultant
Patricia Riggs is a citizen of the Ysleta del Sur Pueblo. Her background includes Indian
Country program and policy development. She has is the founder of the Ysleta del Sur Pueblo Economic
Development and Tribal Court departments.
Acknowledgements:
This article had many contributors. Primary thanks go to the tribes and authors that shared their
experiences in this document, the Cheyenne River Sioux Tribe and Tribal Ventures, as well as
the Ysleta Del Sur Pueblo. Special thanks are due to Stephen Cornell, John Ehiri, Celestino
Fernández, Miriam Jorgensen, Douglas Taren, and Nicolette Teufel-Shone at the University of
Arizona; Gwen Phillips at the Ktunaxa Nation and the British Columbia First Nations’ Data
Governance Initiative; Sarah Kastelic at the National Indian Child Welfare Association; Malia
Villegas, Sarah Pytalski, and Amber Ebarb at the National Congress of American Indians; staff
members and students at the Native Nations Institute; and numerous tribal leaders for frank and
thoughtful input and insights. The authors gratefully acknowledge the W.K. Kellogg
Foundation and the Morris K. Udall and Stewart L. Udall Foundation for their financial
support.
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ABSTRACT
For Indigenous communities in the United States, data about Indigenous people, particularly at
the nation level, present challenges in terms of availability, quality, and relevance. Nonetheless,
tribal leaders and others depend on data to set internal and influence external policy, make
decisions, and take strategic actions. Using key informant interviews, document review, and
literature analysis, this paper provides two case studies of tribes that directed their own
demographic and socio-economic data initiatives to create locally and culturally relevant data for
decision making. The case studies describe the data challenges the tribes faced, the resulting
tribal data initiatives, community engagement and education, and internal as well as external uses
of the data. The tribes used the data deliberately to inform capable governance and to influence
policy and make decisions that supported the nations’ self-determination and long-term vision.
Yet challenges and questions remain for tribes seeking to govern their own data.
INTRODUCTION
Indigenous nations, like all communities, require data in order to prioritize and develop
policy, promote transparency, make strategic decisions, influence external entities, and, most
importantly, to bring the community’s vision of a healthy and vibrant society to life (Adams, Lee,
& Lipsky, 2007; Bruhn, 2014; Cross, Fox, Becker-Green, Smith, & Willeto, 2004; DeWeaver,
2013; Freemantle et al., 2015; Red Star Innovations, 2013, 2015; Tribal Epidemiology Centers,
2013; Villegas, 2011). Yet United States (US) Indigenous nations face a data landscape marred
by sparse, inaccurate, and unreliable information complicated by access challenges (Cross et al.,
2004; DeWeaver, 2010; NCAI Policy Research Center, 2010; Red Star Innovations, 2013,
2015; Trahant, 2013; Tribal Epidemiology Centers, 2013; Villegas, 2011; Westat, 2007).
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Indigenous nations use data to address both internal and external government priorities.
Externally, tribes use data in order to shape federal, state, and local policy and programs to
enhance the lives of tribal citizens, influence lands and resources management, and build
economic resources (Adams et al., 2007; Bruhn, 2014; Cross et al., 2004; DeWeaver, 2013;
Freemantle et al., 2015; Red Star Innovations, 2015; Tribal Epidemiology Centers, 2013).2
Tribes also use data to apply for and receive federal and other funds (Cross et al., 2004;
DeWeaver, 2013; NCAI Policy Research Center, 2013). Internally, tribal governments use data
to make policy decisions; monitor delivery of services, emerging needs of tribal populations, and
the state of tribal lands and resources; and assess progress towards the tribe’s specific strategic
objectives (Adams et al., 2007; Bruhn, 2014; Cross et al., 2004; DeWeaver, 2013; Freemantle et
al., 2015; Red Star Innovations, 2015; Tribal Epidemiology Centers, 2013; Villegas, 2011).
However, the information that US Indigenous nations possess or can access has too often been
gathered by other people and organized for other purposes (Bruhn, 2014; DeWeaver, 2010;
Freemantle et al., 2015; Red Star Innovations, 2015; Tribal Epidemiology Centers, 2013).
The first part of this paper broadly outlines the state of population-based data for
Indigenous peoples, communities, and nations in the US. The second part provides two
examples of tribes that directed their own demographic and socio-economic data agendas. It
describes the data challenges the tribes faced, the resulting initiatives, community engagement
and education about the data initiative, and uses of the data. The paper closes with how data use
enhanced the tribes’ self-determination and governance, and remaining challenges.
2
Note that Bruhn (2014), although written from a Canadian perspective in a Canadian produced peer-reviewed
journal utilizes case examples from the United States.
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THE STATE OF DATA FOR TRIBAL COMMUNITIES
There are five critical problems with Indigenous population data today: (1) scarcity, (2)
poor quality, (3) irrelevance, (4) mistrust, and (5) external control.
Scarcity
Data on US Indigenous populations collected by the federal government, tribes, and
others exists in multiple venues such as the US Census Bureau, vital statistics, health, education,
housing, law enforcement, the military, and justice systems (Cross et al., 2004; DeWeaver, 2010,
2013; Freemantle et al., 2015; Todd, 2012; Westat, 2007). Yet for Indigenous populations and
nations, data gathered through standard channels often do not exist (Tribal Epidemiology
Centers, 2013). Where once the US government and others reported data regularly, e.g., biannual Bureau of Indian Affairs (BIA) Labor Force Reports, Indian Health Service (IHS)
statistics every two to three years, Bureau of Justice Statistics (BJS) annual data on American
Indians and crime, the federal government no longer issues those reports with the same
consistency or at all (Bureau of Indian Affairs, 2015; Bureau of Justice Statistics, 2012; Indian
Health Service, 2009; Shalala, Trujillo, Harry, Skupien, & D'Angelo, 1997; Shalala, Trujillo,
Hartz, & D'Angelo, 1999; U.S. Department of Health and Human Services, 2001, 2004, 2008,
2015). As an example, the next section describes the gaps in reporting of labor force data from
the BIA, which, if available, might be used in monitoring program outcomes, addressing
emerging needs, and setting data-informed policies.
Bureau of Indian Affairs American Indian Population and Labor Force Reports
From the 1980s until 2007, the BIA prepared reports on the US Indigenous population
eligible for services from the US Department of the Interior. Data include enrollment, service
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population, and labor force presented by state, region, and tribe. Tribes submitted data, with
some omissions due to a lack of resources at the tribal level to collect and report data (Bureau of
Indian Affairs, 2015). The Indian Employment, Training, and Related Services Demonstration
Act of 1992 (PL 102-477) mandated at least biennial reporting of BIA Labor Force data. Such
reporting occurred steadily from the 1980s until the 2005 data report issued in 2007. The BIA
did not issue a subsequent report until a 2014 release of the 2013 report on 2010 data; essentially
no data was reported for 2005-2010 (Bureau of Indian Affairs, 2015). This latest report changed
methodologies by combining tribally submitted data with US Census data, and also stopped
collecting some information, added information, and altered how tribes had to report other
information. These changes effectively prohibit analysis of changes over time (Bureau of Indian
Affairs, 2014). The Department of the Interior cited inconsistencies and misunderstandings in
reporting requirements and survey methodology errors as the reasons for the gap in reporting
(Bureau of Indian Affairs, 2008; Capriccioso, 2012; Laverdure, July 2, 2012). However, tribal
population data is not only scarce—the data that is available is often of poor quality.
Poor Quality
Data inaccuracies exist across sectors, including demographic, labor, health, well-being,
economic, education, child welfare, law enforcement (Cross et al., 2004; DeWeaver, 2010, 2013;
Freemantle et al., 2015; Westat, 2007). This section details demographic data inaccuracies
resulting from US Census undercounts.
Indigenous Peoples Enumeration and US Census Bureau Socio-Economic Data
In 1928 the Meriam Report cited the lack of accurate statistics about Indians as a major
problem and suggested the need for additional questions to better reflect the population (Lewis
Meriam and Assoicates, 1928). This legacy continues; the US Census Bureau severely
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undercounts federal Indian reservation and urban populations to this day (DeWeaver, 2013;
Lujan, 1990; Passel, 1976; Snipp, 1989; U.S. Census Bureau, 2012). During 1980 US Census
process, the US Census Bureau attempted to improve their data on Indigenous peoples, directly
contacting tribal governments to share process information, hiring Indigenous peoples to work in
US Census Bureau offices, and distributing public relations information to tribes and at
Indigenous conferences (U.S. Census Bureau, 2007). The 1990 US Census saw Indigenous
peoples hired to collect data within their own communities (U.S. Census Bureau, 2007). At the
advice of an American Indian Advisory Committee, the US Census Bureau implemented a
comprehensive enumeration on reservations by oversampling households in reservation
communities for the 2000 US Census (Maury & Pemberton, 2009). This process enhanced tribal
data and statistical reports (Maury & Pemberton, 2009). However, with the collection of socioeconomic data using the American Community Survey (ACS) after the 2000 US Census (Maury
& Pemberton, 2009), the US Census Bureau lost ground in their pursuit of improved socioeconomic data (DeWeaver, 2013). The sample size each year is smaller than the previous longform US Census sample size; the ACS samples under four million per year while the 2000 US
Census long-form sampled 17.5 million (DeWeaver, 2013). For American Indian reservations
and other populations under 20,000, this results in serious implications (DeWeaver, 2013); small
sample sizes render most ACS variables unreliable (U.S. Census Bureau, 2014). In addition, to
obtain reliable information about reservation communities, five years of data must be aggregated
(U.S. Census Bureau, 2014). Time-period data may blur year-to-year changes in population,
economic, and other socio-economic characteristics (DeWeaver, 2013). The ACS methodology
resulted in undercounts of reservation populations; in 2010 the ACS extrapolation fell 14.8%
below the 2010 US Census count (DeWeaver, 2013). The US Census Bureau implemented
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changes to the ACS in 2011 to address issues of small sample size; the impact of these changes is
yet uncertain—only the 2016 aggregated 5-year report will assess the impact of the 2011 change.
(DeWeaver, 2013). Unfortunately, US Census data present the only nationally comparable
socio-economic data for jurisdictions, including US Indigenous nations (DeWeaver, 2013).
Unreliable data hampers a tribe’s ability to meet the needs of tribal citizens and
community members, achieve strategic goals, and assure healthy, vibrant communities (Bruhn,
2014; DeWeaver, 2010; Freemantle et al., 2015).
Irrelevant
“Others” have defined and collected the socioeconomic and health information available
to tribes since the beginning of colonization (Bruhn, 2014; Cross et al., 2004; DeWeaver, 2010,
2013; Freemantle et al., 2015; Red Star Innovations, 2013, 2015; Westat, 2007). The US
Census, administrative databases, and many surveys collect self-reports of tribal affiliation that
may or may not align with tribal enrollment records (Bruhn, 2014; Cross et al., 2004;
DeWeaver, 2010, 2013; Freemantle et al., 2015; Todd, 2012; Westat, 2007). The BIA compiles
labor force data, IHS reports on health statistics, and BJS provides information on American
Indians and crime (Bureau of Indian Affairs, 2015; Bureau of Justice Statistics, 2012). The topics
measured generally do not align with tribal self-conceptions, needs, and priorities, and therefore
do not adequately inform those making policy and resource allocation decisions (Bruhn, 2014;
Cross et al., 2004; DeWeaver, 2010, 2013; Freemantle et al., 2015; Red Star Innovations, 2013,
2015; Westat, 2007). This section provides an example of the irrelevance of vital statistics data.
Colonial processes that subjugated Indigenous self-determination resulted in identification
categories defined by the oppressing government that may not align with peoples’ self-perception
and result in subsequent misclassification (Freemantle et al., 2015).
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US Indigenous Mortality Data
Mortality rates approximate community health and the effect of public health endeavors
(Anderson et al., 2014; Freemantle et al., 2015). Assessing challenges to population health
through mortality rates allows policymakers to develop informed legislation, programs, and
strategies (Anderson et al., 2014; Freemantle et al., 2015). In two studies of racial and ethnic
misclassification on US death certificates, up to 30% of US Indigenous peoples were
misclassified on death certificates, with misclassification higher in urban areas and lower in rural
areas and those areas with a higher proportion of Indigenous peoples (Arias, Schauman,
Eschbach, Sorlie, & Backlund, 2008; Support Services International, 1996). Further, US
mortality data derived from vital statistics for Indigenous peoples are not always available for
tribal jurisdictions, and do not allow tribes to assess rates for tribal citizens who live off the
reservation (Anderson et al., 2014; Freemantle et al., 2015; Frost, Tollestrup, Ross, Sabotta, &
Kimball, 1994; Harwell et al., 2002). State vital statistics offices often record race and ethnicity
as reported by someone other than the individual or a family member; and in some cases, the
individual completing the death certificate makes a guess as to the deceased’s race (Rhoades,
2006; Westat, 2007). As part of the solution, Freemantle, et al. (2015) advocated for
partnerships between Indigenous nations and government statistics offices, international
networking and strategizing among Indigenous peoples facing similar challenges, and national
plans to address data shortages and inaccuracies. A report by the private consulting firm Westat
(2007), also has suggested improving vital statistics data for Indigenous peoples through the
adoption of new guidelines for reporting race and ethnicity and training those who report.
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Mistrust
Past research and policy approaches have left Indigenous individuals and communities
mistrustful of participating in or supporting data collection (Beauvais & Trimble, 1992;
Christopher, 2005; Cochran et al., 2008; Manson, Garroutte, Goins, & Henderson, 2004), not
least because data on Indigenous peoples has long been used in ways that Indigenous peoples do
not support (Beauvais & Trimble, 1992; Burhansstipanov, 1999; Burhansstipanov & Dresser,
1994; Christopher, 2005; Cochran et al., 2008; Israel, Eng, Schulz, & Parker, 2005; Kunitz,
1996; Manson et al., 2004; Pacheco et al., 2013; Roubideaux, 2002; Shelton, 2004). In a
contemporary incident, researchers consented and collected blood samples from Havasupai tribal
citizens in Arizona to study the genetics of diabetes (Shaffer, 2004). Researchers then used these
blood samples for purposes not listed on the consent form, such as analyzing the genetics of
schizophrenia, and shared the data with others in the US which violated the trust between the
researchers and participants as well as the tribe (Cochran et al., 2008; Shaffer, 2004).
Mistrust also stems from lack of community voice in the data collection process; research
conducted by, and policies made by “outsiders” or non-community members; ignorance or
outright disrespect for cultural practices, beliefs, and knowledge; past failures to honor
commitments; returning “results” to community members in technical language that is difficult
to use and understand, or not returning the resultant data at all. (Burhansstipanov, 1999;
Burhansstipanov & Dresser, 1994; Cochran et al., 2008; Israel et al., 2005; Kunitz, 1996;
Pacheco et al., 2013; Roubideaux, 2002; Shelton, 2004). But even when the data is “returned”,
rarely do tribes have ownership or control of it.
135
External Control
Broadly, data sovereignty is the idea that nations’ laws apply to digital information
residing within the nation.(Rouse, 2013) Data governance refers to the ownership, collection,
control, analysis, and use of data (The Data Governance Institute, 2015). Discussions of data
sovereignty and data governance have occurred in Canada resulting in the development of
Indigenous owned and controlled national datasets (First Nations Information Governance
Centre, 2012; Martens et al., 2010; Smylie et al., 2011), as well as community-based, nationdriven data governance (British Columbia First Nations' Data Governance Initiative, 2015a,
2015b, Undated). In discussions about tribal public health, Indigenous nations in the U.S. have
voiced the need for similar tribal control of data (Red Star Innovations, 2015).
OCAP™: Data Sovereignty and Data Governance
The Canadian First Nations Information Governance Centre established and
trademarked principles of First Nations information governance as OCAP™, which stands for
ownership, control, access, and possession (First Nations Information Governance Centre,
2014). Originally conceptualized in the late 1990s as standards for conducting research with
Indigenous communities, the current OCAP™ now extends to encompass Indigenous
jurisdiction and collective rights with respect to information (First Nations Information
Governance Centre, 2014). The OCAP™ principles are not prescriptive; rather, they allow for
contextualization, including interpretation and application according to local Indigenous cultures
and values (First Nations Information Governance Centre, 2014).
In Canada, OCAP™ has been widely adopted as guidance for the ethical conduct of
research in Indigenous communities, and many First Nations have implemented the information
governance principles (First Nations Information Governance Centre, 2014). Yet challenges
136
remain, particularly around the nexus of data, laws, and federal and other governments (First
Nations Information Governance Centre, 2014). In addition, while the OCAP™ principles aim
to be adaptable to local situations, the concept is not a panacea; Indigenous communities in
Canada have not universally accepted nor implemented OCAP™ (First Nations Information
Governance Centre, 2014) and some have pursued their own, self-determined information
governance and research ethics agendas(Nga Pae Ote Maramatanga, 2014). OCAP™ provides
guidance to those seeking to partner or work with First Nations and provides insight to
individual Indigenous nations thinking about data governance (First Nations Information
Governance Centre, 2014). However, OCAP™ does not provide resources for data collection,
nor can it replace the important discussions internal to Indigenous nations concerning familiarity
with, control over, and effective use of data to meet the nation’s self-determined vision of a
healthy, sustainable community (First Nations Information Governance Centre, 2014).
The burdensome colonial legacy of violations of trust and beliefs as well as utilizing data
defined and collected by others hinders tribes, reinforcing a mismatch between what tribes
envision and the information they need to enact that vision. In short, lack of reliable and accurate
data that meets the needs and visions of Indigenous nations limits the ability of policymakers to
make informed decisions thereby hampering tribal self-determination and capable governance
(Cross et al., 2004; DeWeaver, 2013; Freemantle et al., 2015).
Tribal Innovations
The current data landscape stands as a call to tribes to cultivate a strategic relationship
with data. Strategies employed by or that can be used by tribes and others include advocating for
the federal government and other entities to collect and analyze reliable data more frequently
(Cross et al., 2004; DeWeaver, 2013; Freemantle et al., 2015); creating meaningful partnerships
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and data sharing agreements with other governments, including other tribes, and data collection
entities (Cross et al., 2004; DeWeaver, 2013; Freemantle et al., 2015; Tribal Epidemiology
Centers, 2013); stewarding research through institutional review boards and research regulations
including data sharing agreements (Cross et al., 2004; Oetzel et al., 2015); engaging the
community in defining information needs and data indicators (Cross et al., 2004; Knudson et al.,
2012; Oetzel et al., 2015; Red Star Innovations, 2013); and identifying needs and planning for
the effective collection, management, and use of data at the tribal level as an essential part of
everyday governance (Cross et al., 2004; DeWeaver, 2013).
An effective tribal data initiative can enhance a tribe’s governing capacity, strengthen the
ability of a tribe to be responsive to community needs, protect against past ethical violations,
allow the tribe to be culturally authoritative by deciding what and how to measure, utilize
Indigenous knowledge and epistemologies, and develop relationships that bolster a nation’s
power to exercise its sovereignty (Cross et al., 2004; Galloway, 1995; Oetzel et al., 2015; Red
Star Innovations, 2015).
Experiences with lands and resources management, justice systems, child welfare,
demographic, and socio-economic data shows that US Indigenous nations are capable of
building technical capacity and partnerships to revitalize resources, increase profits, or otherwise
meet the tribe’s needs and strategic vision (Antell, Blevins, Jensen, & Massey, 1999; Berry, 2009;
Champagne & Goldberg, 2012; Cornell & Kalt, 2007; Cross et al., 2004; Edwards, Morris, &
RedThunder, 2009; Galloway, 1995; Harvard Project on American Indian Economic
Development, 2006; Krepps & Caves, 1994; Massey & Blevins, 1999; Wakeling, Jorgensen,
Michaelson, & Begay, 2001). The example below shares a successful effort by two US
Indigenous nations to create reliable and relevant socio-economic data.
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Wind River Indian Needs Determination Survey (WINDS)
The Wind River Indian Reservation in Wyoming, home to the Eastern Shoshone and
Northern Arapaho tribes, developed and implemented the Wind River Indian Needs
Determination Survey (WINDS) in partnership with university, federal, and state entities
(Antell et al., 1999; Massey & Blevins, 1999). Conducted in 1987, 1998, and 2010, WINDS
collected data in a number of areas, such as population, labor force, poverty, transportation,
health, recreation, personal security, and access to services (Antell et al., 1999; DeWeaver, 2013;
Massey & Blevins, 1999). WINDS supplants US Census and other sources of data by creating a
reliable and valid survey through a partnership between the tribes, the University of Wyoming,
state and local governments, and others that more accurately enumerated the reservation
population through the use of tribal citizens interviewers who conducted household surveys;
collecting and reporting demographics according to reservation categories of interest such as
Arapaho, Shoshone, other Indian, and non-Indian categories; and asking about activities and
needs that are locally and culturally relevant (Antell et al., 1999; DeWeaver, 2013; Massey &
Blevins, 1999). The initial 1987 survey presented more accurate and detailed employment and
income statistics for the reservation population, including income, job, and educational data at
the reservation and tribal levels, as well as differences between Shoshone, Arapaho, other
Indians, and non-Indian populations (Antell et al., 1999). Having accurate and reliable income,
job, and education data at the reservation and tribal levels led to an influx of over $20 million
dollars by 1996 from federal, state and other sources to address inequities and challenges (Antell
et al., 1999). These funds were previously unobtainable as the US Census data did not provide a
breakdown by tribe or assess persistent unemployment that lasted for longer than five years; thus,
the US Census data produced by and for the U.S government was more like an obstacle than a
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tool, preventing the tribes from obtaining needed federal and state resources to mitigate
longstanding poverty and unemployment among Indigenous peoples on the reservation (Antell
et al., 1999).
The following sections provide further insight into tribal data collection efforts by two
Indigenous communities that strategized to collect, analyze, and use population data to enhance
their nations’ self-determination, governance, and sovereignty.
APPROACH
The Native Nations Institute at the University of Arizona (NNI) conducted qualitative
research using a case study design to explore opportunities for tribes to improve community
health beyond health care provision.3 During the project, NNI and the six participating tribes
encountered challenges to obtaining demographic, socio-economic, and health outcomes data
comparable across tribes. However, tribes displayed consistent efforts to address data challenges
by effectively collecting, analyzing, and using tribal data. One tribe, the Ysleta del Sur Pueblo
(YDSP) agreed to publish their demographic and socio-economic data project. YDSP, a pueblo
located near El Paso, TX, had over 1,700 tribal citizens in 2014. In an effort to provide diversity
to the discussion, NNI sought out another example of tribally controlled demographic and socioeconomic data collect, analysis, and use. Criteria for selection included location in another
geographic region of the US, diversity in cultural traditions, larger tribal enrollment, and
different data collection methods than YDSP. Excluded were non-federally recognized tribes,
3
The Human Subjects approval at the University of Arizona and with each of the tribes stipulated
maintaining the anonymity of the participating tribes unless tribes specifically consented to being named in
publications, presentations, or elsewhere.
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tribes located in the US Southwest, Pueblos, and tribes with 5000 or fewer tribal citizens. The
Cheyenne River Sioux Tribe’s Tribal Ventures Voices Research fulfilled these criteria.
The researchers selected a case study design to facilitate telling a story to provide insight
into the tribes’ experiences and to represent the co-learning and co-production of knowledge that
occurred among the collaborating authors (Smith, 1999, 2012; Wallerstein & Duran, 2006). The
case study design also enabled the researchers to explore and discuss experiences of different
groups via cross-site, comparative analysis (Creswell, 1998). The University of Arizona
Institutional Review Board approved the case study process. The tribes reviewed the final
document and the researcher obtained appropriate approvals for publication from each tribe.
Analysis of the two case examples employed a literature review, key informant interviews
and follow-up communications, and document analysis. Case study tribe documents reviewed
included published reports, federal acts, presentations, web sites, and promotional documents.
The researcher collected documents during interviews, via internet searches, and from follow up
conversations and information requests with the tribal case study co-authors.
The researchers assured reliability and validity of the case study contributions through an
iterative process affecting all aspects of the case study endeavor including review of relevant
literature and other documents, discussions with other researchers and practitioners, ongoing
conversations with key informant interviewees/co-authors, and fact checking in published
documents. The process included determining what the case study sought to document via
conversations with the researchers and co-authors and creating the key informant interviews
based on available literature and conversations with others who operated in a user or advocacy
role with regards to tribal data. The researcher also verified the information provided through
key informant interviews, follow up conversations, and written co-author contributions via
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document review. The process was a continuous conversation that included case study tribe coauthors as co-learners and co-producers of the examples presented in this publication. This
method of assuring reliability and validity resonates with both Western qualitative research
methods and Indigenous methodologies (Golafshani, 2003; Morse, Barrett, Mayan, Olson, &
Spiers, 2002; Smith, 1999, 2012; Wallerstein & Duran, 2006).
The three main themes that emerged during the case study process were: 1) strategically
responding to data challenges, 2) engaging with the community to educate leaders and citizens
about data and gather input for defining variables, the data collection process, and the analysis
and use of data, and 3) using data to inform policy and resource allocation decisions and
strengthen Indigenous nation sovereignty.
TRIBAL SOCIO-ECONOMIC AND
DEMOGRAPHIC DATA INITIATIVES
Some US Indigenous nations have addressed data challenges in diverse and creative ways
yielding solutions to strategic, capacity, and funding challenges. The following case studies
provide insight into YDSP and Cheyenne River’s data initiatives as provided by co-authors
Patricia Riggs at YDSP and Eileen Briggs at Cheyenne River. Citations are included for
available documentation.
CASE 1: YSLETA DEL SUR PUEBLO
Ysleta del Sur Pueblo, located near El Paso, TX, is the southern most pueblo along the
Rio Grande River (Ysleta del Sur Pueblo, 2015a). Forced to march 400 miles from New Mexico
by Spanish captors during the Pueblo Revolt, the YDSP people established the current pueblo in
1682 (Ysleta del Sur Pueblo, 2015d). YDSP had about 3000 citizens in 2014; over 1,700 lived on
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the almost 3000 acre reservation and the surrounding tribal service area in 2014 (Ysleta del Sur
Pueblo, 2015a).
Data Challenge
In 2007, the YDSP became concerned that the US Census Bureau’s 2000 decennial
census data, used by the tribe, the federal government, and others to set policy, design programs,
and allocate resources, failed to reflect the serious downturn in the pueblo's economy triggered by
the State of Texas’ 2002 closure of the YDSP's gaming operations. The tribe and its Economic
Development Department (EDD) desired timely, accurate information in order to develop a
culturally relevant, community-driven, nation-based economic development strategy.
Tribal Data Initiative
In 2008, YDSP implemented its Comprehensive Economic Development Strategy (CEDS).
Spearheaded by the YDSP EDD, community and economic development goals and objectives
were established to develop a roadmap that would support the nation in its quest to “create jobs,
foster a stable and diversified economy, and improve living conditions,” (Gomez, Riggs, &
Simental, 2008, p. 1-2). To meet the CEDS goals, the YDSP needed demographic and socioeconomic data to establish a baseline, monitor progress toward objectives, and implement
changes to programs and policies in response to the information provided by the data.
The YDSP embarked on an effort coined Tiguanomics, derived from the pueblo’s word
for the people, Tigua. Tiguanomics represents the “Pueblo's efforts to transform into a datadriven nation through the enhancement of data collection and statistical analysis to promote
informed decision making and improve tribal governance, programs and services” (Ysleta del Sur
Pueblo, 2015b).
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Methodology and Approach
Each year the enrollment office requires YDSP citizens to update their contact
information. In 2008, the EDD appended a survey to the annual enrollment paperwork to collect
baseline data for the CEDS. The paper survey collected data on income, marital status, gender,
educational attainment, employment status, job function, employment industry, veteran status,
household size, social assistance, and household computer and internet access (Ysleta del Sur
Pueblo, 2008). The resultant Ysleta del Sur Pueblo 2008 Socio Economic Profile provided up-to-date
information on the data collected that was either previously only available from the 2000 US
Census or not available at all (Ysleta del Sur Pueblo, 2008). As a result, the YDSP decided to
annually collect demographic and socio-economic data through the enrollment process.
The YDSP EDD, enrollment office, and citizens designed and validated the
interdisciplinary research methodology in partnership with the Institute for Policy and Economic
Development at the University of Texas at El Paso (Ysleta del Sur Pueblo, 2008, 2010, 2012b,
2012c). The paper survey uses a census approach, requiring citizens to respond to the survey as
part of the annual enrollment department information update. The EDD manages the survey
process; the EDD director, a YDSP citizen, contributes community and cultural knowledge and
a master’s level data specialist brings scientific knowledge to the data initiative. The tribal
enrollment office serves as the main data storage facility for all data at YDSP (Ysleta del Sur
Pueblo, 2015e). Annual data collected includes population, poverty rates, household incomes,
educational attainment, workforce and unemployment, and cultural participation (Ysleta del Sur
Pueblo, 2010, 2012b, 2012c). The survey had an average 90% response rate for the years 20082014.
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The socio-economic profiles also collected community-level data. The EDD collaborated
with other tribal departments to analyze structural elements internal to YDSP that affected the
pueblo’s economy such as the availability of affordable housing and jobs, enterprise revenues
injected into the economy, and the monetary impacts of economic “leakages”. In addition to
these internal inquiries, the socio-economic profile also assessed external factors affecting the
pueblo’s economic performance, including data on the health of the neighboring regional
economy, the opportunities and threats to the pueblo’s economy posed by external trends and
forces, and the availability of partners and resources for YDSP economic development.
Community Engagement and Education
The success of the socio-economic profile hinged on community engagement and
empowerment. Citizens and leadership played a large role in the development of data collection
instruments and methods. A committee composed of community members, leadership, and
department heads provided guidance to YDSP EDD staff. The YDSP EDD gathered citizen
input through focus groups and planning sessions. The EDD held community meetings to
educate citizens and descendants on data terminology, explain how YDSP’s data differs from and
expands on other available data, and share how YDSP’s government uses the data to make
informed, needs-based decisions. Demonstrating the benefits of data and including the
community in the process resulted in both leadership and citizen support of the socio-economic
profile plan.
Internal Data Dissemination
The YDSP EDD disseminated the findings to the community and stakeholders in
tailored formats. The final products include a technical report for professional purposes such as
grant writing and reporting to federal government agencies as well as a community summary
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distributed by mail and email. The reports can also be found on the YDSP website (Ysleta del
Sur Pueblo, 2008, 2010, 2012b).
Additional Surveys
As a result of the Pueblo’s experience with the socio-economic data process, YDSP
initiated other data collection initiatives to support strategic decisions. YDSP did not have a land
use plan; the pueblo desired a plan including non-Indigenous land uses such as economic
development and land preservation as well cultural land uses. YDSP leaders decided that
community engagement was key to developing a comprehensive land use plan for the community
to ensure that future development incorporated the communities voice and vision for land use.
The pueblo engaged community members through a survey to garner community input
regarding preservation and use of lands. Citizens then participated in a community charrette, a
meeting of all YDSP community stakeholders to resolve conflicts and map solutions to plan for
the future together. As a result, the land use plan discusses non-Indigenous uses for lands and
describes the relationships between people and the land, individuals’ roles in the community, and
the importance of land for cultural continuity (Ysleta del Sur Pueblo, 2012a).
The pueblo has also gathered information about alternative and renewable energy,
created small-business profiles, and explored citizenship and blood quantum via surveys (Ysleta
del Sur Pueblo, 2009, 2012a, 2013). The pueblo does not complete every data project in
isolation, rather YDSP collaborates with other entities to validate questionnaires, develop
methods, and conduct analyses. These data collections efforts differed from US Census Bureau,
research projects conceived outside of the community, and large national surveys; the YDSP
determined needs, methods, analyses, reporting, storage, and use of these data.
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Internal Data Uses
The CEDS vision of economic development fostered cultural preservation and improving
qualify of life. CEDS intent was to create a “community” that would support the pueblo’s ability
to keep YDSP citizens together so that they could maintain the vitality of YDSP as a nation
(Gomez et al., 2008). To enact this vision, the pueblo’s goals included creating a business
corporation with an independent board separate from YDSP’s tribal council, building the
community’s housing inventory, increasing the tax base through policy revision, supporting
workforce development and entrepreneurs, and the development of a nation building program
(Gomez et al., 2008). The strategies to achieve these goals were based on the socio-economic,
financial, and other data collected and analyzed by the pueblo. Seven years later, YDSP can
demonstrate through data that the strategies were a success, e.g., new jobs were created through
the development corporation, the housing inventory was augmented making affordable housing
more available for citizens, the education of youth, citizens, and leaders on nation building
strategies (Ysleta del Sur Pueblo, 2015c).
External Data Uses
The YDSP used their socio-economic data to successfully receive a US Housing and
Urban Development’s (HUD) Indian Community Development Block Grant (ICDBG)
program grant. The YDSP EDD economic development program focused in part on
encouraging entrepreneurship. The pueblo needed a suitable facility to provide business
incubator services such as office and conference spaces and computer services. In 2010, YDSP
applied for a grant under HUD's ICDBG program for construction grant funding for the
proposed type of facility.
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HUD rejected the YDSP application based on available data from the US Census Bureau
and BIA. The data showed that the project would not primarily benefit low- and moderateincome persons on the reservation.
YDSP filed a challenge to the HUD ruling stating that the US Census Bureau and BIA
data that HUD used was not correct and lacked critical variables. For example, the US Census
Bureau numbers, derived from the 2000 decennial Census, failed to reflect the serious downturn
in the pueblo's economy since the 2002 closure of the YDSP gaming operations by the State of
Texas (Gover, 2002; National Indian Law Library, Undated). The data also did not reflect
movement of needy tribal members onto the reservation with the construction of new low
income housing as a result of a previous HUD grant (Joseph, 2008).
YDSP provided its own 2010 socio-economic profile data and information on the survey
design and methodology to HUD (Ysleta del Sur Pueblo, 2012b). The data detailed that the
majority of persons to be served by the proposed Tigua Technology Enterprise Center were in
on-reservation households that were of low to moderate income (Ysleta del Sur Pueblo, 2012b).
HUD accepted YDSP’s data and the project was approved (Department of Housing and Urban
Development, 2011).
Summary
At YDSP, crucial demographic and socio-economic data, once solely gathered and used
mainly by outsiders, are now collected and analyzed under YDSP control. YDSP leveraged an
existing process, the updating of enrollment contact information, to collect locally relevant data
at the community level. These data enhanced self-determination and governance through up-to
date, valid information on which the pueblo established culturally relevant economic priorities,
strategic orientation, policies, programs. and deliver services in a culturally appropriate manner.
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CASE 2: CHEYENNE RIVER SIOUX TRIBE
Tribal Profile
The Cheyenne River Sioux Reservation “is home to the Cheyenne River Sioux Tribe’s
four Ospaye (bands) of the Great Sioux Nation: the Mnicoujou, the Siha Sapa, the Oohe
Numpa, and the Itazipco,” (Cheyenne River Sioux Tribal Ventures, 2011a). The tribe had
19,765 enrolled tribal citizens in 2015 (Cheyenne River Sioux Tribal Ventures, 2015d). In 2014,
10,564 people lived within the Cheyenne River Sioux Reservation boundaries, 8,556 were
American Indian (Cheyenne River Sioux Tribal Ventures, 2015d). In contrast to the YDSP
reservation’s urban character, the Cheyenne River Sioux Reservation covers a rural and remote
area of almost 3 million acres (Cheyenne River Sioux Tribal Ventures, 2015d). On average,
fewer than 2 people reside in each square mile of the reservation (Cheyenne River Sioux Tribal
Ventures, 2015d).
Data Challenge
Cheyenne River Sioux Reservation suffered from extreme poverty; the 2000 decennial US
Census recorded the median household income as $22,094 and in 2005 the BIA reported 88%
unemployment on the reservation (Bureau of Indian Affairs, 2005; U.S. Census Bureau,
Undated). The tribe sought to establish a comprehensive plan to address reservation poverty. To
create, enact, and assess the plan, the tribe needed data beyond the information provided by the
federal government through the US Census and BIA; the tribe required timelier data aggregated
at the reservation level that included locally and culturally relevant variables (Cheyenne River
Sioux Tribal Ventures, 2014). Data beyond those collected by the federal government would
allow Cheyenne River to determine goals, set policies, allocate resources, and assess the impact of
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a community-based, culturally-relevant poverty reduction plan (Cheyenne River Sioux Tribal
Ventures, 2015b).
Tribal Data Initiative
The Cheyenne River Sioux Tribe’s 2006-2016 poverty reduction plan, A Path for Our
People, in partnership with the Norwest Area Foundation (NWAF) seeks to create sustainable
partnerships and strategies to address poverty on the Cheyenne River Sioux Reservation
(Cheyenne River Sioux Tribal Ventures, 2015a, Undated). The NWAF’s 9.5 million dollar
partnership investment provided seed money to establish Cheyenne River Sioux Tribal Ventures,
an entity poised to enact the poverty reduction plan through a future- and prosperity-oriented,
community-informed, Lakota values-based strategy (Cheyenne River Sioux Tribal Ventures,
2015a, Undated). The Cheyenne River Tribal Ventures initiated the Voices research project to
collect baseline demographic and socio-economic data to meet the tribe’s needs (Cheyenne River
Sioux Tribal Ventures, 2015b).
Methodology and Approach
The Voices research project utilized demography and survey expertise at the Colorado
State University to create a reliable and valid survey and data collection process (Cheyenne River
Sioux Tribal Ventures, 2014). Extensive community engagement through meetings and focus
groups guided the selection of variables, length of the survey, question wording, and data
collection methods (Cheyenne River Sioux Tribal Ventures, Undated). The research employed a
random, stratified, disproportionate sample; researchers contacted every fourth house in each
reservation community and surveyed up to five families per structure (Cheyenne River Sioux
Tribal Ventures, 2014).
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The questionnaire, administered in person, collected an array of information over a
variety of domains via 150 closed-ended questions including basic demographics, community
characteristics, land and land use, housing, education, work history and skills, family income,
family expenses, childcare, saving/borrowing/credit, microenterprise businesses, shopping,
transportation, technology and communication, natural resource consumption, and cultural
resources (Cheyenne River Sioux Tribal Ventures, 2015b). The data collection instrument also
allowed researcher to record open ended responses to the questions (Cheyenne River Sioux
Tribal Ventures, 2014).
Voices employed 38 people; 76% of employees were tribal members (Cheyenne River
Sioux Tribal Ventures, 2015b). In 2012 and 2013, the project conducted face-to-face surveys
with 819 families living in 547 structures; 150 respondents consented to voice recording of their
interviews (Cheyenne River Sioux Tribal Ventures, 2014). Researches, in collaboration with
Sweet Grass Consulting, LLC, employed quantitative and qualitative analysis methods using
common coding and software (Cheyenne River Sioux Tribal Ventures, 2014). The principal
investigator and the project’s advisory committee reviewed and approved each analysis
(Cheyenne River Sioux Tribal Ventures, 2014). Tribal Ventures stores the Voices data for future
analysis and use (Cheyenne River Sioux Tribal Ventures, 2014).
Community Engagement and Education
A critical part of the Voices work has been engaging community in the poverty reduction
plan strategy and research process, and sharing data with participants, tribal leadership, and
citizens (Cheyenne River Sioux Tribal Ventures, 2014, Undated). A series of community
meetings shared project goals, solicited community input, and held space for discussions
concerning how to create data about, by, and for the community (Cheyenne River Sioux Tribal
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Ventures, 2014, Undated). Researchers also provided education in lay terms about data
collection, analysis, and use (Cheyenne River Sioux Tribal Ventures, 2014).
A fourteen-member advisory committee guided the community-based project, including
creation of the research protocol, survey questions, marketing, surveying, data analysis, and
community and public presentations of project findings in collaboration with Voices staff and
Colorado State University consultants. The project provided employment, training, and
experience to the tribal citizens; seventy-six percent of project staff were tribal members
(Cheyenne River Sioux Tribal Ventures, 2015b).
Additional Surveys
The success of the original Voices research project has led to an increased interest in
additional surveys of families and other populations living on the reservation in key topical areas.
Voices revealed that 47% of Cheyenne River residents were unemployed; 42% of those
unemployed were seeking employment (Cheyenne River Sioux Tribal Ventures, 2014). With a
population over 10,000, approximately 2,000 adults are seeking work; there is a great need for
jobs on the reservation (Cheyenne River Sioux Tribal Ventures, 2014). In 2014, tribal and nonprofit organizations collaborated to conduct a Cheyenne River Workforce Development Survey
to gain a better understanding of the work force needs and assets in the community (Four Bands
Community Fund, 2015). The researchers distributed survey invitations via email, postcards, and
at businesses to supervisors, employees, and unemployed individuals. Using paper and e-forms,
428 participants responded, “41% were unemployed, 47% were employed, and 12% were
employers/supervisors” (Four Bands Community Fund, 2015, p. 3). The survey findings
informed the development of a reservation-wide strategy to increase the skills of individuals
seeking permanent employment, while ensuring that employers build their capacity to effectively
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hire and retain qualified employees. For example, as one example of use of findings to inform
programs, the survey found that the three most desired trainings by those currently unemployed
are bookkeeping/accounting, resume writing, and commercial driver license training. The Pine
Ridge Area Chamber of Commerce recently began offering resume-building strategies as part of
their job readiness series (Four Bands Community Fund, 2015).
Internal Data Dissemination
Data sharing occurred first with tribal citizens and the community via a variety of
methods. Voices staff committed to publically reporting back the results to Cheyenne River
communities via (1) an executive summary, (2) a “Data Matter” full-page serial in the local
paper, and (3) community meetings with over 500 community members.
The 50-page Voices Executive Summary shared visually appealing pie charts and data
points and provided photos and narrative explaining the research process, results, and staff roles
(Cheyenne River Sioux Tribal Ventures, 2014). Voices also partnered with a local newspaper, the
West River Eagle, to print a full-page “Data Matter” section on a bi-weekly basis (West River
Eagle, 2015). “Data Matter” presented snippets of the Voices research outcomes around various
themes such as education, shopping, and leadership.
Within five months of releasing the Voices Executive Summary the project began a wave of
community and tribal organizational presentations that provided an overview of the research
results. Staff completed 45 presentations in 12 weeks. This step sought to establish accountability
and credibility of the Voices research project and results with the participants and communities
first, prior to sharing any findings with other tribes or entities. Voices staff used these sessions to
highlight data of particular interest to people and educate them about the importance of data and
statistics. Tribal leaders and community members at the presentations indicated to Voices staff
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that seeing themselves in the data and family photos in the reports and presentations instills
confidence in the data and the process.
Internal Data Uses
Voices collected data on employment in categories that the federal government does not
assess in order to ascertain participation in the arts microenterprise sector; outside data sources
missed a vibrant and active economic sector as 78.1% of those surveyed by Voices participated in
traditional arts and crafts sales enterprises as individuals or in groups of 5 or fewer people
(Cheyenne River Sioux Tribal Ventures, 2014). The extent of this work had not previously been
documented. The data helped to justify a microloan program from the tribe’s community
development fund to support the arts and crafts producers and to assist the artists in creating
small businesses (Cheyenne River Sioux Tribal Ventures, 2011b, 2015e).
Voices also generated interest in tribal regulation and governance of research and data
and in research as an activity by and for Cheyenne River people. The tribe has a Tribal Research
Review Board ordinance in the approval process, and Voices staff have begun conversations with
leadership and departments about improving data stewardship and management. The Voices
research processes and the move toward creating a Tribal Research Review Board are the first
steps toward a comprehensive data governance plan.
Meanwhile, the Tribal Ventures staff and various organizations including the Oglala
Lakota College, reservation-based non-profits, the tribal health department, and others recently
collaborated to host a Cheyenne River Research Symposium (Cheyenne River Sioux Tribal
Ventures, 2015c). The all day symposium focused on steps needed to make a longer life for the
Cheyenne River people through a better understanding of the importance and benefits of
research now and for the future (Cheyenne River Sioux Tribal Ventures, 2015c). Leading
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researchers from Cheyenne River and beyond presented to over 150 participants. The event also
included a student research competition for high school and college students to build enthusiasm
and experience in collecting, using, and presenting data (Cheyenne River Sioux Tribal Ventures,
2015c).
External Data Uses
Other primarily reservation-based organizations utilized the Voices data for planning,
education, grant applications, and to demonstrate need for funding requests and allocations. For
instance, the local community development financial institution, Four Bands Community Fund,
used the data to write grants, relying on information such as the Voices finding that 78.1% of
those surveyed participated in Arts Microenterprise (Cheyenne River Sioux Tribal Ventures,
2014). In addition to the tribal community development fund activities, Four Bands Community
Fund received money to provide resources to support local, traditional arts and crafts
entrepreneurs to develop businesses.
Summary
The Cheyenne River Sioux Tribe’s Voices Research project exemplifies a large-scale, indepth survey effort to provide local, relevant population data to guide decisions and funding.
Voices data aid the nation in knowing who lives in what dwellings, who works where with what
skills, and who takes care of children, among many other pertinent issues. Through Voices, the
tribe developed the capacity to collect their own data, and tell their own story and formulate
creative solutions for the problems facing Cheyenne River communities based on the data. The
Cheyenne River Sioux Tribe seeks to develop policies to collect, manage, and secure data.
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LEVERAGING THE POWER OF DATA FOR SELF-DETERMINATION
Strategic Reponses
The two case studies demonstrate that a strategic approach to data begins not with ‘what
can we collect?’ but with ‘what do we want to know?’ The tribes’ processes included questions
such as “What types of data will best inform that knowledge? How will we collect, analyze, store,
and use that information? Who will we partner with to improve the quality of the data? How will
we engage the community in the process?” These questions are not unique to the two case study
tribes or to Indigenous nations. However, the answers may be very different than answers in
non-Indigenous communities. The case studies illustrated that tribes may collect, analyze, and
use different and distinct data to inform policy and allocate resources. For example, the
Cheyenne River Sioux Tribe’s Voices Research collected data on employment in categories that
the federal government does not assess in order to ascertain participation in the arts
microenterprise sector; outside data sources missed a vibrant and active economic sector as 78.1%
of those surveyed by Voices Research participated in microenterprise arts activities. The Ysleta
del Sur Pueblo land use survey included questions about land use for cultural practices and
desired protection of those lands for such practices.
Community Engagement
Cheyenne River and YDSP developed nation-driven data initiatives based on the
community’s vision of a healthy, sustainable society. At both tribes, community engagement
went beyond reporting findings back to citizens to include educating the community on data,
and creating community-based plans, process, methodologies, and variables. Voices educated the
community about the importance of data; trained tribal members in data collection, analysis, and
156
presentation; and strategically decided what data to collect as well as how the data will be used
through a series of community meetings. YDSP used many of the same tactics, most notably the
land use plan process that utilized citizen input to create the variables, interpret the data during
the charrette, and develop a comprehensive land use plan. The engagement processes resulted in
data initiatives that operated at the intersection of scientific community knowledge, resulting in
valid and reliable data.
Using Data To Inform Decisions
There are multiple benefits to nation-designed and implemented data collection. For
tribal governments, data bolster governance and sovereignty through informing policy decisions,
knowing community assets, tracking performance, providing information to effectively defend
sovereignty, and enhancing access to resources. Table 2 on the following page provides examples
of how strategic engagement with data by Cheyenne River and YDSP enabled enhanced selfdetermination, thereby benefitting tribal sovereignty and governance.
157
Table 2. Data for Tribal Self-Determination: The Cheyenne River Sioux Tribe (Cheyenne
River) and the Ysleta del Sur Pueblo (YDSP)
Date Used To
(by Tribe)
Inform internal policy
decisions
(YDSP)
Tribal Example
Enhanced Self-Determination
The federal government determined
YDSP citizen enrollment criteria; citizens
needed at least 1/8 YDSP blood quantum.
The socio-economic profile showed that
the tribal population was diminishing
because tribal descendants were not
eligible to enroll as tribal citizens.
Identify nation’s assets
(Cheyenne River)
Voices research identified a vibrant
traditional arts and crafts sector previously
unaccounted for in federal government
employment data collection efforts.
The tribe assessed citizen knowledge of
financial literacy and nation building, used
that information to design education
programs, and then evaluated the
programs using pre- and post-education
assessments.
The tribe’s Voices and workforce surveys
gathered data on citizens’ work training,
education, skills, and employment history,
providing a more accurate and detailed
picture of workforce needs and assets than
federal government data.
The socio-economic profile and survey of
tribal citizen opinions on citizenship
criteria provide the most comprehensive
available picture of who constitutes the
tribe and what their current socioeconomic situations are.
The tribe collected locally relevant data on
basic demographics, cultural activities, and
economic activities via methods that that
were both community and scientifically
valid.
The data from the socio-economic profile
led to a survey of tribal citizen opinions on
membership criteria. These data provided
support for the implementation of an
enrollment policy modifying past blood
quantum requirements to increase
enrollment and help secure the future of
tribal descendants.
Tribal and local non-profit community
entities developed small support services to
provide business development and financial
trainings for arts and crafts entrepreneurs.
The data collection and analysis process
allowed the tribe to design more effective
programs to expand the capacity of
individual tribal citizens to support selfsufficiency and self-determination.
Track program and
department
performance
(YDSP)
Access resources
(Cheyenne River)
Advocate for external
policy changes (YDSP)
Tell the story of the
tribe to the tribe and
others
(Cheyenne River)
Community non-profits, such as the local
community development fund and chamber
of commerce used the tribe’s data to create
workforce development programs and to
apply for and receive grants to help artists
establish small businesses.
Presented to the US Congress in support of
amending the Texas Restoration Act,
allowing the tribe to determine citizenship
criteria.
The tribe shared findings with tribal
citizens, the local community, and nonprofit organizations through reports,
newspaper articles, and presentations.
CONCLUSION
The current data describing tribal communities and Indigenous populations in the U.S
today do not meet the needs of tribal governments and communities engaged in creating the
policies and programs that are trying to bring alive their own vision of a healthy, vibrant,
culturally-rich, and sustainable society. But it is not enough for tribes simply to take over data
158
collection, even if they have the financial resources to do so. Tribal data efforts have to be
strategically informed. Data methods, design, and collection should match with the values and
vision of the tribe. Tribes will need to carefully consider: What does the tribe need and want to
know about its people, land, culture, resources, and operations? An inclusive visioning and
planning process can establish the nature and purpose of the data that the particular community
needs and wants. The case studies and others tribal data examples in this paper argue for the selfdetermination and governance benefits of investing a strategic approach to data for US
Indigenous nations.
The case studies illustrate that community-based, nation-driven strategic data initiatives
yield previously unavailable information for policy decisions and resource allocation. Future
research, collaborations, and examples should seek to define data sovereignty and data
governance by and for US tribes, address how Indigenous nations can successfully implement
strategic data initiatives as part of capable governance, and provide innovations in mitigating
human and financial capital challenges. More research is needed to explore the current status of
health, social services, and related data in US tribal communities and the implications of the data
limitations on the planning of health, social services, and related programs for Indigenous
nations. Indigenous nations and others should identify unique factors that influence tribal
capacity to collect and manage data. Tribes might want to distinguish private community-level
data, such as traditional practices, cultural sites, and ceremonial artifacts, and establish protocols
and practices for protecting such data. Also, Indigenous nations and other should explore what
are successful methods for educating the community about data and engaging them in the data
process.
159
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Appendix B. Manuscript 2
169
Title: Improving Tribal Public Health Systems through ndigenous Nation Sovereignty
Authors
Stephanie Carroll Rainie (Ahtna Athabascan)
Associate Director and Senior Researcher
Native Nations Institute, University of Arizona
[email protected]
Aleena Hernandez (Yoeme)
Executive Director
Red Star Innovations
[email protected]
Audience
The intended audience is both Indigenous and ally public health practitioners and
scholars, and federal and other funders. To reach this audience the first target: American Journal
of Public Health, Framing Health Matters. Other possible journal: Social Science and Medicine.
170
Goals
Main Purposes:
1. To outline the differential investments and exclusion of tribal governments from other
federal, state, and local public health improvement efforts since the 1990s;
i. To demonstrate how current public health management has contributed to an
uncoordinated approach that supports thousands of unconnected and uncoordinated
programs
2. To provide examples of equitable inclusion of tribes through systems and infrastructure
investments in tribal public health
3. To discuss recommendation for investing in tribal public health for tribes, federal, state, local
and other governments, other funders, researchers, and others
Document Use for the Reader:
1. To acquire information
2. To influence policy and funding decisions
Underlying Purpose:
1. To document this discussion
2. To create a permanent record for policy makers and program directors
3. To support the proposition that the inclusion of tribes in governmental public health efforts
has the potential to improve health equity for Indigenous populations
4. To advocate that inclusion, respecting sovereignty, and equitable investments across public
health authorities support the health of the nation
171
ABSTRACT (117/120 WORDS)
Tribal public health infrastructures and capacities are far below federal, state, and local
public health authorities. Since the 1990s, differential investments in tribal public health
compared to other US public health authorities have resulted in infrastructure and capacity
differences. In the US, this situation has contributed to funding thousands of unconnected
programs; the outcome is poor allocation of resources that yields overlapping efforts and
simultaneously unmet needs. Tribes, in partnership with researchers and federal, state, and local
governments, should continue to develop framework(s) that intersect Indigenous knowledge and
mainstream public health innovations such as public health accreditation and public health
institutes to improve tribal public health infrastructures thus supporting tribal public health
capacity and efficient resource management.
INTRODUCTION (3214/3500 WORDS)
Indigenous peoples are the architects of interconnected frameworks and ways of life that
kept people healthy.1-5 Pre-contact with colonizing societies, these frameworks informed systems
that were tribal public health.3 Colonialism eroded many of these systems.1-4 Rebuilding selfdetermined tribal public health systems at the intersection of Indigenous and mainstream public
health practice offers a path forward for protecting and promoting the health of Indigenous
communities and families.6-8
In recognition of the federal government’s government-to-government relationship with
tribes, the definition of public health authority set forth in 2000 included federally recognized
American Indian tribes in addition to federal, state, territorial, and local governments; tribes can
make and enforce public health laws, assess, assure, and set policy to protect and promote healthy
172
communities.9 Yet tribes have not been included in many public health initiatives.7,8 Federal and
other funds have not been invested in tribal public health systems in ways similar to investments
made in federal, state, and local public health authorities,7,8 resulting in infrastructure and
capacity inequalities.6,8,10,11 In general, efforts to improve and coordinate national public health
policies and practices do not include tribal public health authorities.6-8,12,13
Since the release of the Institute of Medicine’s (IOM) 1988 report, The Future of Public
Health,12 the field of US public health has been working diligently both to create a framework for
public health function and services and to build effective and coordinated governmental public
health systems.8,13 Despites tribes possessing the same public health authority as other US
governments, the IOM’s follow-up 2002 report The Future of the Public's Health in the 21st
Century failed to address tribal public health authorities as part of the larger national public
health system.13 The exclusion of tribes from national public health improvements not only
results in infrastructure and capacity disparities between tribal and other public health
authorities,6,8 but also threatens the security of US public health.14-16
Public health is a local and a global issue.14-16 Today’s global society ensures that both
communicable and non-communicable diseases spread easily across jurisdictional boundaries.14-18
Tribal jurisdictions often overlap with a number of state and local jurisdictions,11,19 affecting
outbreak response, law enforcement, and services.19 A coordinated and connected national public
health system that fosters collaboration and partnership among all public health authorities is
necessary to protect and promote public health for Indigenous peoples as well as all US
citizens.7,11
The assurance of public health for all in the US depends upon improving tribal public
health capacity and infrastructure. This paper explains how the infrastructural inequities
173
developed and proposes a solution that promotes US public health. The solution is positioned at
the intersection of mainstream public health and Indigenous ways of knowing, and recommends
actions for tribes, the federal government, and others to move toward equity, and bolster tribal
sovereignty.
BACKGROUND
Indigenous knowledge and cultural beliefs include systems that protect and promote
community health.3 Federal policies have systematically aimed to destroy these tribal systems.20
At the same time, the US Constitution, treaties between the federal government and tribes,
executive orders, and laws obligate the US government to provide health care services to citizens
of federally recognized American Indian tribes.21 In this context of colonialism, tribes are
currently rebuilding their nation’s public health systems.6,8
Despite possessing the same public health authority as other governments, the history of
tribal public health is a history of differential investments by the federal government, including a
focus on health care as opposed to public health and financing services and programs over
coordinated systems.6,8
American Indian Health: A Focus on Health Care Services
The US government has long taken primary responsibility for the delivery of health care
to AIAN populations, an effort led since 1955 by the IHS.22 Since the Indian SelfDetermination and Education Assistance Act of 1975 (ISDEAA, P.L. 93-638) and its
amendments, the US government meets this obligation through direct services or the provision
of funds for tribes or other American Indian organizations that develop and submit a plan to
provide care.21
174
The ISDEAA and amendments began a shift in tribal control of IHS health care funding
and facilities; by 2010, tribes or tribal consortiums managed 38% of hospitals and 80% of health
clinics.23 Per ISDEAA, 638 contracts transfer administration of agreed-upon health care and
public health services from the IHS to tribes. A series of amendments to the ISDEAA, P.L.
100-472 in 1988, the Indian Health Care Amendments of 1992 (P.L. 102-573), and the Tribal
Self-Governance Amendments of 2000 (P.L. 106-260) enhanced tribal control through the
creation of self-governance compacts for health services. Compacts provide money through block
grant-like mechanisms that allow tribes to administers programs and design services to meet
tribal priorities, in essence giving tribes the right to decide how to use federal funds.24,25
While tribes have increasingly reasserted self-determination in health care, IHS still plays
a pivotal role in funding and providing health care and some public health services. As of January
2015, the IHS funded health service provision for citizens of 566 federally recognized tribal
nations and over 2.2 million AIAN people.26,27
In the early years of IHS, services focused on the treatment of infectious diseases, chronic
diseases such as diabetes, and injuries resulting from accidents or violence.28 In the 1980s, as
control over health care services and facilities began to shift from the federal government to the
tribes the predominant focus on treatment began to change. IHS began to invest in preventative
care and environmental services.28,29 This period that saw a growing number of tribes asserting
self-governing powers and assuming a larger role in the delivery of health care to their own
peoples occurred concurrently with increased attention to preventative programs as well as to
behavioral and mental health issues.23
175
While tribal control of health care services and facilities has increased, a need remains for
investments in tribal public health infrastructure to monitor public health, address emerging
needs, manage health
services, and create informed policies to protect and promote Indigenous community and
family health.6-8,30
Tribal Public Health Today
Since 2000, tribes, along with federal, state, territorial, and local governments, possess
public health authority.9 Tribes view their public health authority as a function of their tribal
sovereignty.7,8,11,31 The extent to which tribes exert their public health authority and the history of
their tribal public health systems vary.7,8,11,31 Indigenous nations experience common challenges
to exercising that authority such as building public health infrastructure, establishing
relationship, roles, and responsibilities with state, county, and local health departments, and data
and information sharing.6-8,11,32,33
As an agency of the federal government, IHS possesses public health authority, but since
IHS is not a sovereign government, it has no jurisdiction or legal authority to make laws to
protect or promote health.9 IHS primarily provides health care services, with limited public
health functions such as immunizations, potable water, and food safety inspections.11,28,29 Within
the field of tribal public health, IHS remains a critical partner.11,19 However, misperceptions
abound, often equating IHS with tribal public health systems or only mentioning IHS in broader
discussions of public health entities.13,34
The Centers for Disease Control and Prevention (2014) utilizes ten essential public
health services, depicted in Figure 1.35 Developed in 1994, these serve as the framework for the
National Public Health Performance Standards.36
176
Tribes’ strengths in
Figure 1. Ten Essential Public Health Services
providing these essential services
include to inform, educate, and
empower.37 Tribes face challenges
in monitoring health, mobilizing
community partnerships, assuring a
competent work force, and
evaluation.37 Most tribal health
departments today fall short of the
ten essential public health services
for successfully enacting public
Source: Centers for Disease Control and Prevention, 2014.
health authority.6,30,37
Tribes also face challenges in sharing successes with other tribes and non-tribal entities,
competing for funds, and public health advocacy. 6,30,37 Their strengths include resourcefulness
and innovation in sustaining public health systems despite the lack infrastructure and funding
and providing disease-specific services such as diabetes prevention and care. 6,30,37
A Brief History of Tribal and US Public Health: Differential Investments
US public health entities have experienced significant shifts in focus and funding over the
past 30 years, moving from a disease-based model to a systems model. Surveillance, broad, multisector engagement, capacity building, and feedback to inform local and state policy have become
active components of the US public health system.6,7,8,13 In contrast, tribal public health systems
tend to be disease and program focused, tribe-specific, data oriented toward discrete, static
reports, and limited by tribal consultation requirements and other federal policies.6,7,8
177
The majority of funding for state and local public health systems includes general
guidance on spending. In contrast, funding for tribes tends to be more restrictive requiring
specific provisions and reporting. This trends, exemplifies differential investments.6,8 Federal
investments in tribal public health have remained program focused,6,8,11,33 concentrated on
specific diseases (e.g., the Special Diabetes Program for American Indians and Alaska Natives
established as part of the Balanced Budget Act of 1997, P.L. 105-33),6,8,11,39 and rarely support
the development of infrastructure or systems.6,8,11,33 In addition, tribes operate within a seriously
underfunded system.40 The funding paradigm perpetuates disease focused public health systems
and burdens human and other resources with reporting requirements.6,8,33 As a result, tribes have
often retained the federal focus on disease treatment through health care services and
interventions.6,8,33
After the 1988 IOM report on the future of public health,12 the federal government and
others invested in infrastructure and systems improvements for federal, state, and local public
health authorities.8,13,41 Figure 1 illustrates this way of thinking, with systems management
linking ten essential services and three primary areas of responsibility: assessment, policy
development, and assurance.
In that same time frame, tribal public health emerged from a federally managed paradigm
with the 1975 ISDEAA and amendments supporting federally recognized American Indian
tribes’ control of health care services through contracting and compacting and the federal
definition of public health authority including tribal governments. Passage of ISDEAA was a
pivotal moment as federally recognized American Indian nations began to experience success in
managing tribal resources and programs, including public health programs and services such as
immunizations and food handling safety.8,23,42-47
178
In the 1992 re-authorization of the IHCIA (P.L. 102-573), the federal government
invested in tribal public health through the creation of Tribal Epidemiology Centers (TEC) that
align with the twelve IHS regions. TECs work with tribes to monitor health, improve health
services, and identify health priority areas and possible actions to address priority areas.48 The
TECs improved data quality and access for tribes but have been limited by an emphasis on
creating static data reports and by continuing primary adherence to mainstream conceptions of
health indicators and outcomes such as morbidity, mortality, and service utilization rates.6,30
In 2010, the Affordable Care Act (P.L. 111-148) extended tribal public health authority
to TECs to increase access to US DHHS data as well as training and technical assistance from
the Centers for Disease Control and Prevention (CDC). Despite the authorization to acquire US
DHHS data, challenges remain for accessing other federal, state, county, and local data,
including a lack of data sharing agreements and fees associated with obtaining data from some
jurisdictions.30 State and local governments as well as private entities also restrict access to some
data due to privacy concerns; some state laws prohibit certain types of health data sharing.49
Subsequently, TECs and tribal public health authorities are excluded from many local and
national surveillance systems.50 While states conduct surveillance efforts, their monitoring often
insufficiently captures Indigenous populations.50-52 The absence of strategies to capture
Indigenous populations in state surveillance endeavors concerns TECs and tribal leaders as
Indigenous peoples are often disproportionally affected by emerging public health concerns.30
For example, during the H1N1 outbreak, Indigenous peoples experienced four times the
mortality rate than all non-Indigenous populations combined, with the greatest differences for
the very youngest (7.2 times for 0-4 years) and eldest (5.0 times for 65+ years) Indigenous
peoples, yet the disparity was not brought to the attention of federal, state or tribal leaders during
179
the outbreak.53 While state and local public health entity and TEC monitoring assist tribes, these
entities are not primarily concerned with the health and well-being of individual Indigenous
nations. Indigenous nation governance of tribal public health systems focuses on creating a
society that promotes and protects the health of its citizens.7,8,31,33
Health Governance Improves Public Health
The World Health Organization’s World Health Report 2000 – Health Systems: Improving
Performance recognized stewardship, or governance, as central to improving health systems.41
Building capable governance of health systems requires defining the nation’s vision and direction
on which to base health policy and approaches to regulation, and collecting and using data to
inform health policies and programs.41,54 Informed health governance requires evidence-based
Western scientific knowledge and a strong grounding in community values and local
knowledge.17,55 Responsible health governance governs by collaborating with other entities and
engaging citizens.17
Government structures and governance of public health systems vary from nation to
nation and tribe to tribe.31,41 In 2010, the National Indian Health Board found that elected tribal
councils governed over half of tribal public health boards.19
In the US, tribal governance of tribal public health has led to success in tribal/state
partnerships, such as: service sharing to improve access to communicable disease screening and
treatment, prevention services, coordination of communication and emergency preparedness, and
surveillance.31,56-59 However, national public health network improvements through
communication, increasing infrastructure and capacity, and building systems did not include
Indigenous nations.8
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Today tribes engage in rebuilding their tribal public health systems both within the
federal paradigm availing themselves of options under ISDEAA and outside the federal
framework through sovereign, self-determined actions.7,8,23 As tribes rebuild, they do so in within
a fractured system with poor infrastructure.6,7,8,11 A coordinated approach, internally improving
tribal public health and externally strengthening the US public health system is more effective
than investing in thousands of unconnected and uncoordinated programs.12,13,17,60
A PATH FORWARD FOR TRIBAL PUBLIC HEALTH
Reclaiming Tribal Public Health through Indigenous Knowledge
Indigenous knowledge systems are holistic, ecological, interconnected, and non-linear.15,61,62
Rebuilding self-determined tribal public health systems offers a path forward for protecting
and promoting the health of Indigenous communities and families.3,6-8 But where do tribes start?
Tribes engage in a variety of efforts to improve public health services, capacity,
infrastructure, and systems. The foundation of such improvements includes comprehensive
community planning: identifying the Indigenous nation’s vision of a healthy society, community,
and families and planning a path to protect and promote community and family health to realize
that vision.63-65 In a survey of tribal health departments, Knudsen and all found that
“(p)articipants agreed that community health assessments are not just an outcome, but a process.
The process should include the community, specifically in identifying data indicators.”11p17
Therefore, using Indigenous epistemologies and knowledge to guide community-based, nationdriven defining of health and well-being creates the vision and plan that forms the basis for tribal
health governance.63-65 Indigenous nation self-determination underpins and informs tribal
government public health actions and governance of the public health system.7
Leveraging Mainstream Public Health Practices and Policies
181
Over the past fifteen years, U.S. mainstream public health has moved toward an
accreditation process for local, state, tribal, and territorial public health authorities.66 Launched
in 2011, the non-profit Public Health Accreditation Board manages the process and accredits
tribal public health authorities.67 Accreditation moves public health entities toward national
standards, increases accountability and credibility, provides benefits such as assistance with
stronger services and programs and infrastructure improvement, and offers a framework for
assessing public health systems’ performance.67 Accreditation also requires that state, local, tribal,
and territorial public health authorities partner and work together, increasing coordination and
the strength of the nation’s public health system.67,68
Tribal public health entity readiness for accreditation has not yet been comprehensively
assessed.69 However, national organizations have granted accreditation preparedness funds from
the Centers for Disease Control and Prevention and the Robert Woods Johnson Foundation to
tribes and tribal organizations to prepare tribal public health authorities for accreditation and to
improve tribal public health systems.69 Yet Indigenous nations require more than financial
investments to build infrastructure and capacity.69 During accreditation discussions, tribal
leaders, academics, and other public health professionals have called for an Indigenized public
health framework and strategies to address significant data needs.7
To offer Indigenous nation specific support for public health systems improvements, Red
Star Innovations (Red Star), in partnership with tribes, TECs, and mainstream public health
organizations assessed the feasibility of a tribal public health institute.6 Mainstream public health
institutes operate as non-profits supporting innovation in public health practice and improving
the health of communities through research and convening of public health entities.8 The tribally
driven feasibility study confirmed a need for a neutral tribal public health institute to assist in
182
coordinating a national tribal public health system and working to Indigenize and improve the
current public health framework.6,7,70
While pursuing accreditation and forming a tribal public health institute may improve
tribal public health systems, infrastructure, and capacity, working to strengthen tribal public
health underscores the importance of tribal self-determination and sovereignty in identifying
tribal public health framework(s) at the intersection of Indigenous knowledge and mainstream
public health practice.7,8
RECOMMENDATIONS
Movement toward enhancing tribal self-determination and governance of public health
systems requires action from Indigenous nations, federal, state, and local governments, federal
and other funders, and researchers.
Indigenous nations must reclaim governance of tribal public health system through selfdetermining and defining health to align with indigenous philosophies of wellness. This process
begins with community visioning and planning based on community values and Indigenous
epistemologies and knowledge. Tribal sovereignty and governance of public health do not require
that tribes identify and carry out all the changes to improve tribal public health; effective public
health governance requires a solid vision and a plan to enact that vision through policies and
programs, collaboration and partnership.
Indigenous nations, in partnership with researchers and other governments as
appropriate, should develop framework(s) for tribal public health based nation-specific
definitions of health, healthy families and communities, and health determinants. An Indigenous
public health framework would provide the basis for assessing public health system performance
183
and planning for improvements to strengthen, protect, promote, and sustain healthy Indigenous
communities and families.
Block funding with general guidance on spending directly to Indigenous nations to
support comprehensive community visioning and planning, framework development, and a
coordinated system within and external to tribal health departments would bolster tribal public
health governance through capacity and infrastructure growth.
The federal government and tribes must examine the success of the current governmentto-government relationship models and processes and consider a new model. Building a new
model may require increased investments in processes establishing effective government-togovernment partnerships, formalizing agreements, e.g., data or service sharing, and coordinating
efforts in fulfilling the CDCs Ten Essential Services.
A new model would address federal, state, and local governments’ responsibility and
benefits of supporting tribal data sovereignty and data governance through building tribal data
capacity, aligning data with tribal self-conceptions, and forming data sharing agreements.
In turn, research can track the public health impact of federal policies designed to support
tribal sovereignty and self-determination through block funding and other support for tribal
public health system infrastructure development.
CONCLUSION
Guided by Indigenous conceptions of health and interconnected systems of life and
current mainstream public health practices and federal policies, tribes can set community-based,
nation-driven, culture informed methods and metrics for establishing, monitoring, and assessing
public health policies and programs to support healthy communities and families. Self-
184
determined tribal public health offers a path forward for protecting and promoting the health of
Indigenous communities and families and strengthening the US public health system.
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Appendix C. Manuscript 3
191
Title
Reclaiming Indigenous Health in the US: Moving Beyond the Social Determinants of Health
Authors
Stephanie Carroll Rainie
Alphabetical Order by Last Name, Final Author Order Pending Contributions
Jessica Black, MSW, Gwichyaa Zhee Gwich’in, Native Village of Fort-Yukon
Assistant Professor/Indigenous Studies and Special Projects Liaison
University of Alaska, Fairbanks CRCD Office of the Vice Chancellor
PhD Candidate, School of Social Work, Washington University in St. Louis
[email protected]
Stephen Cornell, PhD (sociology)
Professor, Sociology
Director, Udall Center for Studies in Public Policy
Faculty Associate, Native Nations Institute
University of Arizona
[email protected]
Angela Gonzales, PhD (sociology), Hopi
Associate Professor, Cornell University
[email protected]
Miriam Jorgensen, PhD (political economics)
Research Director, Native Nations Institute
Research Professor
Udall Center for Studies in Public Policy, University of Arizona
[email protected]
Lynn Palmanteer-Holder, MEd, Colville
Former Tribal Leader, Confederated Tribes of the Colville Reservation
Consultant
Lecturer and PhD Candidate,
School of Social Work, University of Washington
[email protected]
Jennifer Schultz, PhD (sociology)
Senior Researcher, Native Nations Institute
Udall Center for Studies in Public Policy, University of Arizona
[email protected]
Michele Suina, PhD (justice and social inquiry), Cochiti Pueblo
Program Director, Good Health Wellness in Indian Country Program
Albuquerque Area Southwest Tribal Epidemiology Center
[email protected]
192
Nicolette Teufel-Shone, PhD (anthropology)
Professor, Mel and Enid Zuckerman College of Public Health
University of Arizona
[email protected]
193
Goals
Main Purposes:
4. To critique the World Health Organization’s (WHO) social determinants of health
framework for use in US Indigenous nations and communities, and suggest a new Indigenous
determinants of health schema
5. To propose how progress through Indigenous control of health care and research has lead to
reclaiming Indigenous health as the next step in self-determination
6. To discuss the implications of the framework and reclaiming Indigenous health for tribes,
federal, state, local and other governments, other funders, researchers, and others
Document Use for the Reader:
3. To acquire information
4. To influence policy and funding decisions because conceptions of may differ from Western
ways of knowing
Underlying Purpose:
1. To document and create a permanent record of the discussion of underlying assumptions of
the WHO social determinants of health framework that threaten its validity in Indigenous
applications
2. To justify the merit of Indigenous self-determination (and sovereignty) in conceptualizing
health
3. To advocate for utilizing Indigenous conceptions of health as a framework for guiding
decisions to improve health and wellness in US Indigenous nations and communities, such as
the metrics, methods, and programs established to foster good health
Audience
A public health journal with a high impact factor in order to broadly reach both
Indigenous and ally public health practitioners and scholars, and federal and other funders. First
target: American Journal of Public Health (high impact, quick turnaround nay or yay); Social
Science and Medicine.
194
ABSTRACT
The lack of social determinants of health (SDH) literature for US Indigenous
communities limits information for Indigenous nations as they set policies and allocate resources
to improve the health of their citizens. The researchers sought to gather experts’ feedback
through a consensus panel on the limitations of applying the World Health Organization’s
(WHO) SDH framework in Indigenous communities, Indigenizing the WHO SDH
framework, and Indigenous conceptions of a healthy community. Panel results were: 1) a critique
of the assumptions within the WHO SDH framework that do not cohere with Indigenous
knowledge and epistemologies and 2) a schematic for categorizing Indigenous determinants to
guide policy makers. Reclaiming the definition of Indigenous health and well-being must be
community based and nation driven. Defining Indigenous health is critical to sustaining healthy
Indigenous communities through governance and policy actions on the determinants of health
and well-being.
INTRODUCTION
In the United States, health inequalities between Indigenous and non-Indigenous
mainstream populations have existed for decades.1-3 Morbidity and mortality are concerns for US
Indigenous nations as they shape the future of their nation for their citizens.4-6 Tribal
government efforts to address morbidity and mortality have included health departments, tribal
management of health care services, and stewardship of research. Tribal health departments
operate in ways similar to local health departments.7 However, tribal health departments tend to
conduct more health screenings, perform fewer environmental health and regulatory functions,
assess community health less often, and are more integrated with health delivery systems than
195
local health departments.7 In the US, many federally recognized Indigenous nations have
assumed control of health care services through the Indian Self-Determination and Education
Assistance Act of 1975 (ISDEAA, P.L. 93-638) and its amendments,8 often seizing the
opportunity to address longstanding challenges such as access to services, culturally relevant care,
and tailoring services to local needs.9-11 Tribes have also enhanced stewardship of research within
their nations and with their citizens through governance via research oversight such as
institutional review boards, community involvement in research, and research regulations.12
Indigenous stewardship of research protects against past ethical violations, allows greater
community control of resources, data, and methods, and legitimizes the research.12
However, Indigenous nation health departments, control of health care services, and
stewardship of research is not sufficient to inform health policy decisions. Other underlying
challenges such as conceptions and determinants of health and well-being render tribal
governance action solely focused on control of services and research inadequate to address the
health inequalities and concerns of Indigenous nations.6,13,14 A disconnect exists between many
identified determinants of Indigenous health, such as colonization and on-going discrimination,
and efforts to reduce health inequalities through medical services and interventions alone.13-18
Taking a health equity approach argues for a social determinants focus that examines the roles of
factors other than health care in producing and replicating health inequalities and
operationalizing the role of such phenomena in the production, maintenance, and sustainability
of healthy communities.19 While international studies have addressed the social determinants of
health in Indigenous communities,13,14,17,20-31 published explorations of the social determinants of
health for US Indigenous nations are sparse.32,33 In addition, the World Health Organization
(WHO) social determinants of health framework has been criticized for being prescriptive and
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not reliable for every community.13 The WHO framework is reflective of the disconnection
between Western and Indigenous knowledge and epistemologies concerning health.6,13,14,34
In Australia, Canada, and New Zealand, Indigenous communities have moved toward
utilizing Indigenous conceptions of health in policy, health care, health measurements, and
public health.34-41 A pan-Indigenous theoretical approach to reclaiming Indigenous knowledge
systems, sovereignty, and self-determination regarding health has not been discussed in the peerreviewed literature in the US. But tribal leaders have voiced the importance of the utilizing
Indigenous conceptions of health to improve health and public health policy and action in the
US.6
The lack of literature on Indigenous conceptions and the social determinants of health for
US Indigenous communities as critical informers of Indigenous nations’ policies led the
researchers to explore via a consensus panel what a viable health determinants framework would
look like for US Indigenous nations. This paper presents the panel results, including 1)
assumptions within the WHO social determinants of health framework that do not cohere with
Indigenous knowledge and epistemologies and 2) a schematic for identifying Indigenous
determinants of health based on Indigenous epistemologies at the intersection of Indigenous and
Western knowledge to guide policy makers.
BACKGROUND
The Social Determinants of Health Framework and Indigenous Nations
The WHO stated that the social conditions in which individuals grow, live, and age have
a greater impact on health than behaviors, genetics, or health care.42 Yet the majority of health
research dollars in the US are spent investigating medical technology and the impact of health
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services and interventions.43 Social inequality, stress, early childhood experiences, social
exclusion, employment opportunities, social support, food security, and availability of
transportation are social and economic characteristics that consistently affect the health outcomes
of individuals and communities worldwide.44,45
Indigenous communities’ unique historic, social, and political experiences yield distinctive
social determinants of health such as self-determination; colonization; migration; globalization;
cultural continuity and attachment; relationship with lands; social support, capital, and cohesion;
racism and social exclusion; and justice systems.13,14,17,20-31 These factors have been shown to affect
health outcomes for Indigenous peoples.13,14,17,20-31 In the US, research about Indigenous-specific
social determinants of health is sparse. In 1989, Campbell stated that evidence existed that "the
epidemiology of Native American people changed under the hegemony of European contact".33p1
Research demonstrates that first contact with Europeans, subsequent population decimation by
disease and warfare, federal assimilation efforts, the limited and changing federal definitions of
American Indian nation sovereignty, and the continual redefinition of federal trust responsibility
are some of the factors affecting the health of American Indian communities.33 In 1994, Young
described how biology and culture interacted with disease causation, distribution, and control for
US and Canadian Indigenous peoples.32 US and international researchers have called for more
information on the social determinants of health particular to Indigenous communities.13,14,17,18,2031,33,46,47
Health and Well-being
Since 1947, the WHO has promoted a more comprehensive view of health that includes
social and mental well-being in addition to physical health and the absence of disease.48 The
Declaration on the Health and Survival of Indigenous Peoples presented as the result of a WHO
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consultation on Indigenous peoples’ health to the United Nations Permanent Forum on
Indigenous Issues in 2002 expands this definition for Indigenous communities:
Indigenous Peoples’ concept of health and survival is both a collective and
individual inter-generational continuum encompassing a holistic perspective
incorporating four distinct shared dimensions of life. These dimensions are the
spiritual, the intellectual, physical, and emotional. Linking these four fundamental
dimensions, health and survival manifests itself on multiple levels where the past,
present and future co-exist simultaneously.49
Indigenous knowledge systems are holistic, ecological, interconnected, and nonlinear.34,50-54 Indigenous epistemologies are premised on the notion that everything is alive and
related, and each being has a responsibility to fulfill its role.55
In Australia, Canada, and New Zealand, Indigenous efforts to reclaim and reframe health
using Indigenous knowledge and epistemologies exist.35-41 In Australia, the National Aboriginal
Health Strategy set in 1989 further Indigenizes the WHO definition by adding cultural wellbeing and community health to the definition of aboriginal health.35 In an updated version
adopted by the National Aboriginal Community Controlled Health Organization Constitution
as amended in 2006, “‘Aboriginal health’ means not just the physical well-being of an individual
but refers to the social, emotional and cultural well-being of the whole Community in which
each individual is able to achieve their full potential as a human being thereby bringing about the
total well-being of their Community. It is a whole of life view and includes the cyclical concept
of life-death-life.”41pp5-6 The similarities in these movements include Indigenous action embracing
non-linear relationships between health and illnesses and holistic solutions to improving
community health and well-being that utilize efforts beyond health care and public health.35-41
Indigenous epistemologies and theories for reclaiming Indigenous knowledge systems,
sovereignty, and self-determination regarding health and well-being have not been described in
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the peer-reviewed literature in the US. The National Institutes of Health and some tribes have
embraced the Medicine Wheel as a pan-Indigenous or nation-based approach that generally
utilizes a circular, directional-based approach to including physical, mental, emotional, and
spiritual concepts in approaches to health.56,57 However, the Medicine Wheel does not represent
the variety of Indigenous knowledge systems represented by US Indigenous nations.58
Critiques of employing the WHO social determinants framework in Indigenous
communities have noted the disconnect between Western and Indigenous knowledge and
epistemologies inability to capture holistic and land-based Indigenous health beliefs.13
METHODS
The research method consisted of a consensus panel conducted via standard methods.59
Convened in Tucson, AZ, February 17 and 18, 2015, the consensus panel narrowly focused on
creating normative feedback among experts on the social determinants of health in US
Indigenous nations about the limitations of the social determinant of health framework for
Indigenous communities, Indigenizing the WHO social determinants of health framework,44,45
and Indigenous conceptions of a healthy community.59-61
The consensus panel comprised project researchers and invited experts as co-learners and
co-producers of ideas. Invitees included select scholars engaged in the topics of Indigenous
health and social determinants. The research project paid participant travel costs and provided a
stipend. Prior to the meeting, the lead researcher created and provided participants with a
meeting agenda, a list of participants, and a draft manuscript outline on Indigenous health and
social determinants.
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The researchers assured reliability and validity of the methods and results through an
iterative process affecting all aspects of the consensus panel including a review of relevant
literature and other documents and discussions with other researchers and tribal leaders, program
directors, and staff. The process included creating the agenda and manuscript outline based on
available literature. The agenda and manuscript outline acted as the consensus panel guide.
Standard note taking procedures were followed during the panel which researchers used to
produce a written summary document. Analysis of the topics and consensus occurred through an
iterative process of discussion during and after the panel. The researcher verified the information
via conversations over email, phone, or videoconferencing. This method of assuring reliability
and validity resonates with both Western qualitative research methods and Indigenous
methodologies.50,51,59-63
RESULTS
The positionality of the four researchers and four invited experts who participated in a
consensus panel influenced the construction of the thoughts in this paper.63-66 Diverse by culture,
academic discipline, and life experiences, the eight participants represented five US Indigenous
nations, allied non-Indigenous peoples, and the academic disciplines of education, justice and
social inquiry, political economics, public health, social work, and sociology. The ideas in this
paper emerged from the convergence of each participant’s contribution based on their position in
the world and the group.63-67 The results reflect different perspectives formed into shared ideas
and epistemological pluralism of disciplines.63-67
The consensus panel results fall into two categories: 1) a comparison of Indigenous
knowledge and underlying Western world views in the WHO social determinants of health
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framework44,45 and 2) a schematic for categorizing the determinants of health and well-being for
US Indigenous nations.
Social Determinants of Health Frameworks based on Western Knowledge
The panel agreed that the efforts to Indigenize the WHO social determinants
framework44,45 do not interrogate the assumptions that undergird the model. Thus, assumptions
must be acknowledged for the framework to inform policies for health equity in Indigenous
communities. Table 1 identifies assumptions in the literature and by the panel participants.
Generally, the panel argued that the WHO framework even when adapted to Indigenous
circumstances continue to use Western ways of knowing regarding determinants, health, and
well-being. In addition, the panel felt that the WHO framework used an active voice of the other
working to reach health equity for a subpopulation, e.g., Indigenous peoples, instead of seeking
guidance, knowledge, and episteme from communities.19
Panel participants identified underlying Western concepts in the WHO framework as
descriptive, proscriptive, and linear resulting in a model that perpetuates discipline and system
segregation, defines determinants to operationalize, and suggests that improvements in
determinants lead stepwise to improvements in community health. In contrast, Indigenous
knowledge argues for an action-oriented process that uncovers the holistic network of
interconnected determinants of health and well-being for Indigenous nations. This process
would look to improve Indigenous nations’ policies via strengthening culture, traditions,
languages, and social ties.
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Table 1. Determinants of Health: Indigenous Knowledge and Western World Views
Indigenous Knowledge of Determinants, Health, and
Well-being
Indigenous voice
Action oriented
Process oriented
Holistic
Interconnectedness of all determinants
Focused on the collective, and the individual’s role in
the collective
Aligns movement with the community’s own vision of
a healthy, sustainable society
Allows comparisons between Indigenous populations
Asset based
Community and individual level indicators track
progress toward community’s goals
Incorporates history and spiritual place
Considers future generations and ancestors,
intergenerational, including a role for each community
member
Connects with values, language, culture, land, place,
stewardship
Metrics and measurements reflect Indigenous
conceptions of health and society, including
Indigenous community-specific economic activities,
e.g., individual or small business art production and
sales; tourism
Outcomes include multiple dimensions of health,
including cultural and spiritual
Outcomes include human and non-human health,
such as land, animals, language, etc.
Lack of data available at the nation, reservation, and
tribal citizen levels; Indigenous data need to reflect
Indigenous conceptions of health, well-being, and
determinants
Flexible for application in many communities
Non-Indigenous Knowledge Base in the WHO
Social Determinants of Health Framework
Voice of the “other”
Descriptive
Prescriptive
Linear
Distinctions made between social, individual,
biological and genetic, physical and other
determinants
Focused on the individual
Focuses on “closing the gaps” between subpopulations
and the general or dominant population
Disease and deficit based
Community and population health defined by
aggregate measures of individuals’ health
Decontextualized in time and spiritual space
Lacks relational considerations among people and
between people and non-human world
Determinant indicators and health outcomes primarily
Western-defined disease prevalence and incidence
rates, economics, education, and other measures
Health outcomes primarily conceived as physical and
mental
Outcomes only focused on human characteristics
Access to reliable data
Broadly applicable to all communities
Table 1 relays how the social determinants of health agenda pertains to “closing the gap”
by reducing inequalities between subpopulations and the mainstream or dominant population.19
Comparisons between Indigenous populations that could reveal key successes or challenges rarely
occur in the US or internationally.13,68 Another limitation of “closing the gap” is that using only
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aggregated individual level data that compare with the dominant population does not allow
Indigenous nations to conceptualize appropriate metrics for determinants, health, and well-being
that resonate with the community, culture, and traditions. Examples of these metrics include
measures of non-human health for land and animals, data on spiritual and cultural health such as
language and sacred sites, and indices for determinants that reflect Indigenous realities such as
community conceptions of wealth and jobs.
The WHO social determinants conversation tends to begin and end with measurable
physical health outcomes such as morbidity and mortality, in short, on deficits.19 Panel
participants underscored the importance of recognizing that health and well-being within
Indigenous nations may be their considerable assets; asset-based and non-physical measures of
health may be appropriate for Indigenous communities.
Panel participants also noted that the social determinants framework tends to focus on
the individual and for the most part uses aggregate individual measures to approximate
community health and well-being.13,69 For Indigenous communities, the community or the
collective, not the individual, is generally the preferred unit for thinking about health and
wellbeing, and it is on the community that analysis should center.13 Relatedly, the WHO
framework is decontextualized in time and spiritual space, and lack relational considerations.13
Indigenous knowledge incorporates intergenerational roles and responsibilities into the
community’s vision, history, and spiritual space, including relations with ancestors and those yet
born as well as the land.13,34,50-52,54
The panel noted that Indigenous nations face data challenges; virtually all published
efforts focused on re-thinking the social determinants of health for Indigenous peoples noted the
poor quality of existing data and limited Indigenous nation level data.13,17,18,20-30,33,46,47 The panel
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expressed that the lack of data hinders the development of a specifically Indigenous framework
and limits comparative research. The panel underscored the importance of Indigenous nations
exercising data sovereignty and data governance, in part through financial investments and
collaborations with federal, state, and other governments as well as non-profits.
The panel observed that one model does not work for all communities. The mainstream
social determinants framework too often lacks local specific context. Indigenous nations are
diverse in population size, land base, history, and location. This diversity requires numerous and
disparate policies and Indigenous nation-driven actions. The panel concluded that a holistic
framework focused on community-based conceptions of health and well-being will allow for
including the appropriate array of health and wellness determinants for each Indigenous nation.
Health Determinant Categories
The panel decided that simply modifying the framework employing Indigenous
knowledge was not adequate to inform Indigenous nation policy and action to restore health and
wellness in Indigenous communities. While the panel was reluctant to propose an Indigenousspecific framework, the participants set forth a more holistic schematic for categorizing health
and well-being determinants that could apply to any community. The underlying knowledge and
epistemologies would reflect the nation or community’s ways of knowing, and as such,
conceptions of health and well-being could then inform how health, well-being, and
determinants are measured, assessed, and compared.
The panel categorized determinants of health and well-being to fall into three categories
as shown in Figure 1: 1) broad determinants of health that affect Indigenous and nonIndigenous communities; 2) shared determinants of health among Indigenous communities or
among communities in a certain geography or of a certain culture, e.g., US communities, US
205
Midwest communities; and 3) unique determinants of health evident in one or a few Indigenous
or other communities. The dashed circle in Figure 1 depicts how the WHO social determinants
framework only operationalizes social determinants in relation to physical and mental health.
The schematic in Figure 1 provides space for a variety of determinants and a holistic concept of
health that may include social, cultural, emotional, and other types of health as determined by
the community.
Figure 1. Determinants of Collective Health and Well-being in US Indigenous Communities
Unique determinants are particular to each Indigenous nation such as culture, uses of
natural resources for health and healing, traditional practices and ceremonies, and language.
Shared determinants include resilience, relationships with ancestors and future generations, the
interconnectedness of determinants and health and well-being, relationality, an orientation
206
toward the collective, the individual’s role in the collective, interdependence, importance of and
relationships with ancestral and other lands, place, and space, significance of elders, the
intergenerational transmission of traditional knowledge, the changing meaning of health over the
lifecourse, nation self-determination and sovereignty, and colonization.13,14,17,20-31 Broad
determinants include those identified by the WHO and others as playing a role in creating the
environments where people grow, live, and age, such as governance, community cohesion, jobs,
health and other services.42,44,45
Figure 1 also elucidates the relationships between the three categories and health and
well-being viewed holistically. Unique and shared determinants may overlap. A shared
environmental context may influence health and healing in many nations that exists in a shared
ecosystem, e.g. sage grows in the desert, and many but not all Indigenous nations use sage.
Cultures or languages are shared among a few nations, but not all. Shared and broad
determinants also overlap. Mainstream broad determinants, e.g., governance, community
cohesion, jobs, health and other services, may be conceptualized and measured differently for
Indigenous communities.
The framework in Figure 1 is not prescriptive. Rather, it represents a process that
incorporates partnerships and collaborations to identify unique, nation-based determinants, to
define shared determinants that drive comparison and innovation among Indigenous nations,
and to employ or adjust broad determinants to allow comparisons across Indigenous nations or
with other US populations. The schematic in Figure 1 utilizes Indigenous knowledge and
epistemologies to guide, or co-create with Western ideas, community-based, nation-driven
theories of health and its determinants.
207
DISCUSSION
Moving toward an Indigenous framework for the determinants of health and well-being
in Indigenous communities requires action from and presents challenges for Indigenous nations
and federal, state and private policy makers, funders, and collaborators. The change begins with
community-driven, nation-based processes grounded in sovereignty and self-determination. For
Indigenous nations to create and sustain healthy communities, nations must comprehensively
assess collective conceptions of health at the intersection of Indigenous and Western knowledge
and epistemologies. This nation-based knowledge of community health and well-being allows
Indigenous nations to identify unique, shared, and broad community health indicators and
determinants. In addition to community-based action, collaboration among Indigenous nations
must occur to create metrics and measurements for shared determinants that allow for
comparisons across nations.
Nation-based efforts do not require that Indigenous nations enact every policy or fund
every program; sovereignty and self-determination policies assure that Indigenous nations have
the right to make the decisions and take action to set priorities, enact policy, seek outside funds,
spend funds, and partner with other entities to meet the nations goals.
Challenges for Indigenous nations include securing funding, aligning program and
practices with Indigenous nation priorities, and communicating nation priorities. Tribes need
funding for community planning and development to reinforce or reclaim Indigenous
conceptions of health and well being. The results from the planning and development processes
then inform programs and practices changes that align with community-based, nation-driven
priorities. How will changes be implemented? What resources are needed to make the changes?
208
How will tribes communicate nation conceptions of health and well being to partners,
collaborators, and funders? Tribes face these challenges and more as they focus on reclaiming
Indigenous health.
Federal and other government, non-profit and other funders, and partner entity support
for Indigenous nation sovereignty and self-determination regarding the health and well-being of
Indigenous communities calls for reframing and allowing for differences in how health is
conceptualized in policies, reports, requests for proposals, funding, partnerships, and
relationships with Indigenous nations and peoples. In addition, a shift from funding primarily
health services and interventions to more flexible financial support for planning and systems
improvements require infrastructure investments. Challenges for the federal government and
other funders, collaborators, and partners include flexibility given the plethora of differences
between Indigenous nations and the need for Indigenous nations to determine actions on nationspecific determinants, and establishing and maintaining partnerships based on n self-determined
determinants of community health and well-being.
CONCLUSION
The differences between Indigenous knowledge concerning health and well-being and
Western ways of knowing that underpin the WHO social determinants of health framework
argue for an iterative process to incorporate Indigenous knowledge and practices concerning
health and well-being. Comprehensive community-based, nation-driven reclaiming and defining
of Indigenous health and wellbeing is necessary to address the determinants of health and wellbeing in Indigenous communities. An Indigenous framework will support capable governance
209
and inform policymaking at tribal, federal, and other levels to realize healthy Indigenous
communities.
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Appendix D. Dissertation Dissemination
216
Completed Events
Planning Committee Member and Lead’s Mentor, Native Nations Institute Data and Sovereignty
Meeting. March 3-4, 2015. Native Nations Institute, The University of Arizona. Tucson,
AZ.
Lead, Native Nations Institute Social Determinants of Health Meeting. February 17-18, 2015.
Native Nations Institute, The University of Arizona. Tucson, AZ.
Planning Committee Member, Social Determinants of Health - Indigenous Measures and Off
Reservation Meanings. September 17-18, 2014. Institute for Indigenous Knowledge and
Development, University of New Mexico. Albuquerque, NM.
Lead, Community, Governance, and Culture in the Health of Native Nations: A Policy Forum. April
14-15, 2014. Native Nations Institute, University of Arizona. Tucson, AZ.
Presentations
“Indigenous Data Governance and Open Data Futures,” at the 3rd International Open Data
Governance Conference panel, "Indigenous Data and Open Governments,” May 28-29,
2015 in Ottawa, ON, presented by Stephanie Carroll Rainie.
“Indigenous Community Wellness: Reimagining Indigenous Health,” poster presentation at the
National Congress of American Indians Mid-Year Conference Tribal Leaders/Scholars
Forum, June 28, 2015, St. Paul, MN, presented by Stephanie Carroll Rainie.
217
“The Strategic Power of Data: A Key Aspect of Sovereignty,” panel presentation at the 6th
Biennial International Indigenous Development Research Conference 2014, November
25-28, 2014, Auckland, New Zealand, presented by Stephanie Carroll Rainie.
“The Strategic Power of Data: A Key Aspect of Sovereignty,” presentation at the National
Congress of American Indians Mid-Year Conference Tribal Leaders/Scholars Forum,
June 8, 2014, Anchorage, AK, presented by Stephanie Carroll Rainie and Jennifer Lee
Schultz.
“Moving Resilient Communities Forward: Tribal Sovereignty and Health,” keynote presentation
at the Indigenous Day of Health, Mel and Enid Zuckerman College of Public Health,
The University of Arizona, November 21, 2013, Tucson, AZ, presented by Stephanie
Carroll Rainie.
“Beyond “Health Care” Community, Governance, and Culture in the Health and Wellness of
Native Nations,“ concurrent session presentation at A Promise National Conference:
Reclaiming the Health of our Tribal Nations, May 3, 2012, Tempe, AZ, presented by
Stephanie Carroll Rainie.
“Beyond “Health Care” Community, Governance, and Culture in the Health and Wellness of
Native Nations,“ presentation at the Sixth Annual Social Justice Symposium, Mind the
Gap: Healthcare Disparities Across the Globe, March 23, 2012, Tucson, AZ, presented
by Stephanie Carroll Rainie.
“Opportunities for Improving the Health of Tribal Communities,” presentation at the Udall
Scholar Orientation Session, August 4, 2011, Tucson, AZ, presented by Stephanie
Carroll Rainie.
218
In Progress
Articles
Rainie, Stephanie Carroll, Jennifer Lee Schultz, Nancy Lynn Palmanteer-Holder, Eileen Briggs,
Patricia Riggs. “Data as Strategic Resource: Self-Determination and the Data Challenge
in Indian Country.” In preparation. Submitting to International Indigenous Policy Journal.
Rainie, Stephanie Carroll, Jennifer Lee Schultz, Jessica Black, Angela Gonzales, Nancy Lynn
Palmanteer-Holder, Tassy Parker, Michele Suina, Miriam Jorgensen. “Reclaiming
Indigenous Health.” In preparation.
Rainie, Stephanie Carroll, Jessica Black, Angela Gonzales, Nancy Lynn Palmanteer-Holder,
Michele Suina. “Beyond the Social Determinants of Health for US Indigenous Nations.”
In preparation.
Rainie, Stephanie Carroll, Rachel Rose Starks, Jennifer Lee Schultz, Miriam Jorgensen. “Data
Sovereignty and Data Governance for US Indigenous Nations.” In preparation.
Schultz, Jennifer Lee, Stephanie Carroll Rainie, Randall Akee, Eileen Briggs, Norm DeWeaver,
Miriam Jorgensen, Patricia Riggs. “Strategic Considerations for Native Nations: Data
Governance in Indigenous Communities.” In preparation.
Rainie, Stephanie Carroll, Aleena Hernandez. “Tribal Public Health: Opportunities for
Governance and Self-Determination.” In preparation. Submitting to American Journal of
Public Health.
Policy Briefs
Native Nations Institute. “Reclaiming Indigenous Health”
219
Native Nations Institute. “Data Sovereignty and Data Governance for US Indigenous Nations”
Native Nations Institute. “Opportunities for Governance and Self-Determination in Tribal
Public Health”
220
Appendix E. Human Subjects Determination
221
Appendix F. Focus Group Prospectus
256
Title: Community, Governance, and Culture in the Health of Native Nations: A Policy Forum
Summary
Both health professionals and the leaders of Native nations recognize that community health
and wellness are influenced not only by the health-care system but also by other factors in
community life. In Indigenous communities, these “social determinants of health” may include,
among other things, employment, family stability, language revitalization, collective identity and
pride, a sense of community efficacy, effective self-governance, healing historical trauma,
participation in ceremony, and access to medicine people.
Some of these factors are political, some are cultural. Some focus on the collective, some on
the individual. The point is that these factors generally operate outside the conventionally conceived
health-care system, which means they often are ignored in efforts to address health problems—
despite their potential significance in difficult behavioral health, mental health, and chronic illness
issues.
This raises the question: “What actions can Native communities and organizations take—
outside the conventional health-care system—to improve community health and wellness?”
This one and a half day invitation-only forum will bring together two-dozen tribal leaders,
policy makers, administrators, academics, and other specialists to discuss what actions tribes can take
outside the health-care system to improve the health of their nations’ citizens.
Purposes
To explore the social determinants of health that tribal communities can influence and to
suggest steps tribes can take—outside the health-care system—to improve community health.
Outputs
•
•
•
•
Shared information, experience, and insight
Recommendations of actions tribes can take
Ideas for a written policy brief for tribal leaders and other policymakers that links social
determinants to health outcomes
Suggestions for further research that tribes would find useful
Dates
Monday, April 14, 2014, 4pm-8pm (reception and dinner)
Tuesday, April 15, 2014, 8am-5pm (full day forum)
Contact
Stephanie Carroll Rainie, Manager - Tribal Health Program
(520) 626-0664 (phone)
[email protected] (email)
Funded by the Udall Foundation and the WK Kellogg Foundation.
257
Appendix G. Focus Group Agenda
258
Community, Governance, and Culture in the Health of Native Nations: A Policy Forum
April 14h and 15th, 2014
DAY 1: MONDAY, APRIL 14, 2014
3:00 – 6:00 p.m.
Registration (Foyer)
4:00 – 4:30 p.m.
Reception (Conference Room 3)
4:30 – 6:30 p.m.
Welcome, Prayer, and Introductions (Conference Room 4)
• Welcome: Joan Timeche, Native Nations Institute
• Prayer: Austin Nunez, Chair, San Xavier District, Tohono O’odham Nation
• Overview: Stephanie Carroll Rainie, Native Nations Institute
• Introductions: Jennifer Schultz, Native Nations Institute, Moderator
6:30 – 8:00 p.m.
Dinner (Conference Room 4)
DAY 2: TUESDAY, APRIL 15, 2014
7:30 – 8:00 a.m.
Registration and Breakfast (Foyer)
8:00 – 8:05 a.m.
Opening (Salon C): Renee Goldtooth, NNI, Master of Ceremonies
8:05 – 9:30 a.m.
Framing Presentations: Stephanie Rainie, NNI, Moderator
Jaime Pinkham (Nez Perce), Vice President, Bush Foundation
Melody Lepine, Director, Mikisew Cree First Nation
Lynn Palmanteer-Holder (Colville), Tribal Leader, Confederated Tribes of the Colville
Reservation
9:30 – 10:30 a.m.
Guiding Questions Discussion (Salon C): Miriam Jorgensen, NNI, Moderator
What is the state of knowledge about the social determinants of health in Indigenous
communities? What is known? What are the gaps in knowledge?
10:30 – 11:00 a.m.
Health Break (Foyer)
11:00 – 12:00 p.m.
Guiding Questions Disc. Cont. (Salon C): Jennifer Schultz, NNI, Moderator
What can Native nations do—outside the health-care system—to improve health
outcomes?
12:00 – 1:00 p.m.
Luncheon (Champagne Terrace)
1:00 – 2:30 p.m.
Guiding Questions Disc. Cont. (Salon C): Stephanie Rainie, NNI, Moderator
How can the research community better serve the needs of Native nations?
2:30 – 3:00 p.m.
Health Break (Foyer)
3:00 – 4:00 p.m.
Next Steps Closing Discussion (Salon C): Stephen Cornell, NNI, Moderator
What have we not touched on that is important to discuss? Next steps? Implications?
4:00 – 4:30 p.m.
Wrap-up (Salon C)
Funded by the Morris K. and Stewart L. Udall Foundation and the WK Kellogg Foundation.
259
Appendix H. Focus Group Guiding Questions
260
Focus Group Guiding Questions
Theme 1: What is the state of knowledge about the social determinants of health in Indigenous
communities? What is known? What are the gaps in knowledge?
• Prompts: What do we know about the social determinants of health in Indigenous
communities? What are the research gaps for the social determinants of health in
Indigenous communities?
Theme 2: What can Native nations do—outside the health-care system—to improve health
outcomes?
• Prompt: What do tribes wish they knew and what could they use that they don’t have
regarding the social determinants of health in Indigenous communities?
Theme 3: How can the research community better serve the needs of Native nations?
• Prompts: How can information from practice and research on social determinants of
health be a utilized as a resource for tribes? How do we move knowledge into policy?
What do tribes already use? How do we move information out of academia? How do
tribes share experiences? What could tribes be doing that would move us toward answers
in this area?
Theme 4: What have we not touched on that is important to discuss? Next steps? Implications?
• Prompts: What was missing from today’s conversation? What can each of us do to stay
engaged with Indigenous social determinants of health work?
General Prompts: Can you tell me a little bit more about that? What do others think about that?
261
Appendix I. Focus Group Focusing Card
262
Community, Governance, and Culture
in the Health of Native Nations: A Policy Forum
Hilton Tucson East
7600 East Broadway Blvd, Tucson, AZ
April 14h and 15th, 2014
A brief thematic orientation…
We have a mix of people attending this forum: tribal leaders, tribal program directors,
academics, non-profit reps, and others. We have a number of things on our minds. We want to
get up to speed on the research in this area (what do we think we know?); we also need to think
about what kind of research needs to be done (what do we wish we knew?). But this is not really
an academic session. What we really want to figure out is what actions Native nations can take—
outside the health-care system as conventionally conceived (doctors, clinics, medications, therapies,
etc.)—to improve the health outcomes of their people. And when we call this “a policy forum” it
is tribal more than federal policy that we have in mind.
263
Appendix J. Social Determinants of Health Consensus Panel Agenda
264
Native Nations Institute Social Determinants of Health Meeting February 17-18, 2015
DAY 1: TUESDAY, FEBRUARY 17, 2015
5:45 p.m.
Meet at the Marriot Hotel Reception area
Travel via streetcar to restaurant:
Barrio Cuisine Native American Bistro
188 E. Broadway Blvd, Tucson AZ 85701
(520) 207-9221
6:00 p.m.
Welcome and Introductions
Review Agenda
6:30 p.m.
Dinner and Discussion
DAY 2: WEDNESDAY, FEBRUARY 18, 2015
University of Arizona Student Union
Sabino Room (3rd Floor)
1303 N University Blvd, Tucson AZ 85719
8:30 a.m.
Breakfast
9:00 a.m.
Discussion: Indigenizing the SDOH Framework
What are some current mainstream and Indigenized frameworks?
What is the outcome in the SDOH framework? What are some SDOH factors in Indigenous
communities? How do the outcomes and factors in Indigenous communities differ from
mainstream communities? What is the role of governance?
10:30 a.m.
Break
11:00 a.m.
Discussion: Paper architecture
12:30 p.m.
Lunch and discussion
1:30 p.m.
Discussion: Small group topical discussions for future SDOH research areas/paper spinoffs
2:30 p.m.
Break (with other NNI Staff joining)
3:00 p.m.
Next Steps
What would you like your role to be for the paper?
What is the paper production timeline?
What other activities can we individually or collectively engage with to further these ideas?
4:00 p.m.
Closing
Funded by the WK Kellogg Foundation and the Morris K. Udall and Stewart L. Udall Foundation.
265
Appendix K. Social Determinants of Health Consensus Panel Guiding Questions
266
Social Determinants of Health Consensus Panel Guiding Questions
Theme 1: What are the limitations of the World Health Organization social determinants of
health framework for Indigenous communities?
• Prompts: What are some current mainstream and Indigenized frameworks? What is the
outcome in the SDOH framework? What are some SDOH factors in Indigenous
communities? How do the outcomes and factors in Indigenous communities differ from
mainstream communities? What is the role of governance?
Theme 2: How can the World Health Organization social determinants of health framework be
Indigenized or adapted for use in Indigenous communities?
• Prompts: Appendix J. Social Determinants of Health Consensus Panel Draft Paper
Outline guided this discussion. The Moderator guides the group through a dialogue on
each section of the outline, using general prompts as needed.
Theme 3: What are Indigenous conceptions of a healthy community?
o Prompts: Appendix J. Social Determinants of Health Consensus Panel Draft
Paper Outline guided this discussion. The Moderator guides the group through a
dialogue on each section of the outline, using general prompts as needed.
General Prompts: Can you tell me a little bit more about that? What do others think about that?
Do you agree with that? What might be an alternative explanation? What might be missing from
the discussion?
267
Appendix L. Social Determinants of Health Consensus Panel Draft Paper Outline
268
Draft Paper Outline
1. Introduction
a. Missing in the SDOH discussion: Outcomes = Healthy community.
2. Indigenizing the SDOH Framework (factors and outcomes)
a. General SDOH frameworks
b. Some Indigenous SDOH frameworks
c. A generalizable Indigenous SDOH framework
3. SDOH in US Indigenous communities
a. Indigenous outcomes: healthy Indigenous communities, differences from mainstream
outcomes
b. Indigenous SDOH factors, differences from mainstream factors
4. Sovereignty and SDOH
a. Role of governance in addressing SDOH factors
b. Role of data
5. Conclusion
a. Areas ripe for research
The paper is part of the University of Arizona’s Native Nations Institute Tribal Health
Program and its project, Beyond “Health Care”: Community, Governance, and Culture in the Health
and Wellness of Native Nations, that examines the effects of selected community, governance, and
cultural factors on the health of Native communities. The project is supported by the W. K.
Kellogg Foundation and the Morris K. Udall and Stewart L. Udall Foundation.
269
Appendix M. Data and Sovereignty Consensus Panel Agenda
270
Native Nations Institute Data and Sovereignty Meeting March 3-4, 2015
DAY 1: TUESDAY, MARCH 3, 2015
5:45 p.m.
Meet at the Marriot Hotel Reception area
Travel via streetcar to restaurant:
Barrio Cuisine Native American Bistro
188 E. Broadway Blvd, Tucson AZ 85701
(520) 207-9221
6:00 p.m.
Welcome and Introductions
Review Agenda
6:30 p.m.
Dinner and Discussion
DAY 2: WEDNESDAY, MARCH 4, 2015
University of Arizona Student Union
Sabino Room (3rd Floor)
1303 N University Blvd, Tucson AZ 85719
8:30 a.m.
Breakfast
9:00 a.m.
Discussion: What might tribes need to consider when strategically engaging with data?
10:30 a.m.
Break
11:00 a.m.
Discussion: Paper architecture
12:30 p.m.
Lunch and discussion
1:30 p.m.
Discussion: Small group topical discussions for future data & sov research areas/paper
spin-offs
2:30 p.m.
Break (with other NNI Staff joining)
3:00 p.m.
Next Steps
What would you like your role to be for the paper?
What is the paper production timeline?
What other activities can we individually or collectively engage with to further these ideas?
4:00 p.m.
Closing
Funded by the WK Kellogg Foundation and the Morris K. Udall and Stewart L. Udall Foundation.
271
Appendix N. Data and Sovereignty Consensus Panel Guiding Questions
272
Data and Sovereignty Consensus Panel Guiding Questions
Theme: What might tribes need to consider when strategically engaging with data?
• Prompts
o What is the current state of data for US Indigenous nations? What are the various
types of data that tribes have, that others have on tribes, tribal citizens, or
Indigenous peoples? What type of data do tribes need? How can tribes act to
change the current state of tribal data, data on tribal citizens, and data on
Indigenous peoples?
o Appendix M. Data and Sovereignty Consensus Panel Paper Outline also guided
this discussion. The Moderator guides the group through a dialogue on each
section of the outline, using general prompts as needed.
General Prompts: Can you tell me a little bit more about that? What do others think about that?
Do you agree with that? What might be an alternative explanation? What might be missing from
the discussion?
273
Appendix O. Data and Sovereignty Consensus Panel Paper Outline
274
Draft Paper Outline (not meant as prescriptive-- draft outline to be edited at meeting)
I. Introduction
A. How has data been important for tribes?
i. Provide a few examples, making sure to cover external data used that did not
serve a tribe’s needs and what are the issues for tribes when someone else controls
data – from definition, collection, analysis, etc.
B. Data as a core governmental function(?) Responsibility of Native nations(?) Data
bolsters sovereignty(?) Capacity?
C. Role of data in bolstering sovereignty
D. Framework or analytic approach?
II. What are some considerations for tribes when holistically thinking about data? What
questions should be asked?
A. Strategic Vision and Underlying Values – MOST IMPORTANT
i. Supports strategic vision strategy of tribe
ii. Culturally appropriate – collects data of importance to tribal members
B. Assess existing tribal resources
i. Financial
ii. Technical Capacity/Expertise
iii. Existing processes to which data collection/reporting could be added
iv. Relationships à potential partnerships around data
v. Information – what are some data that tribes already have? Or should think about
having? e.g., membership, labor force, population, living on/off tribal lands,
public health monitoring.
C. Data Development—An iterative process
i. Visioning
a. What kinds of questions does tribe have? What kinds of stories
should be told? (what should the data “do”)
b. About whom? (identify relevant populations and units of analysis,
aggregation)
c. To whom? (identify relevant audiences)
d. Measures – culturally appropriate definitions, collect data of
importance to tribal members, in line with long-tern strategic vision.
ii. Analytic
a. Units of Analysis and Aggregation
b. Data Architecture
c. Database updates and cleaning
iii. Access/Dissemination
a. Sharing protocols (data access, ownership, and confidentiality)
b. Transparency (scheduled public reporting--or not?)
c. Privacy/confidentiality
iv. Sustainability
a. How to ensure?
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Appendix P: Indigenous Data Sovereignty and Data Governance Written Products
276
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