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, 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 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. 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.

Concerns related to the control of personal “digital data” have resulted in initiatives being taken globally to safeguard the individuals’ control over their own data. The EU’s General Data Protection Regulation (GDPR) being a significant example in this connection. Specifically, two protective rights regarding respectively the right for data to be forgotten and their portability have been brought in to enhance individuals’ control over their data. As a consequence, data governance which signifies the “power relations between all the actors affected by, or having an effect on, the way data is accessed, controlled, shared and used, the various socio-technical arrangements set in place to generate value from data, and how such value is redistributed between actors” (Micheli et al., 2020, p. 3) has become a crucial endeavour for governments and businesses around the world. A scrutiny of different models of data governance highlighted the notion of personal data sovereignty (PDS) which indicates enhanced empowerment of data subjects through self-determination. PDS, additionally, entails an appropriate combination of empowerment, economic development, enhanced knowledge and profit to participating private organisations. Further, data subjects, in PDS, have the power to access, regulate, share and investigate their information at all times. In this regard, the present study investigated the manner in which banks in Sweden manage the sustainability of the sovereignty of their data. Based on the problem statement, the research question of the study was formulated as follows: “How do banks govern personal data sovereignty?” The research strategy used for the present study was an exploratory survey design with a quantitative approach to obtain data from executives in Swedish banks. The present study used a survey strategy. Survey strategies employing questionnaires are widespread since they permit standardised data to be obtained from a large population in a very economical manner. Further, the data collected can be easily compared. Moreover, the survey strategy is viewed as reliable, in general, by people and it is also relatively straightforward both for the researcher to explain and for the participants to understand. A custom questionnaire was designed for the study based on insights obtained from existing academic and business research. Sections in the questionnaire were designed to obtain data related to areas such as, data governance in Sweden, personal data, usage of personal data, and PDS. The study’s findings reveal that banks in Sweden take different measures to help their customers maintain their PDS. As a result, bank employees seem to robustly understand personal data, how their banks utilize the personal data of customers, and the extent to which customers are aware of banks’ use of their personal data. It could also be concluded that banks were using measures which were in line with existing Swedish and EU data protection standards and laws. The study’s findings contribute to further research concerning data sovereignty and use of personal data in the banking sector. Further, it can aid banks to manage their global customers’ data. The study was constrained chiefly by the limited empirical literature associated with the study’s topic and the restricted time available for the study

[pt] O presente estudo compreende uma epistemologia crítica acerca da crescente participação de gigantes da tecnologia em setores estratégicos da administração federal no campo da saúde pública no Brasil. Primeiramente é apresentado, em ordem cronológica, o desenvolvimento das principais políticas públicas brasileiras de Saúde Digital, buscando demonstrar sua evolução e fomento à participação do capital privado na área, assim como a terceirização de serviços. Posteriormente, mobilizo os conceitos de Colonialismo Digital e Soberania de Dados para demonstrar o que a oposição entre eles representa, e como esta pode ser observada na prática, no campo da saúde. Por fim, através da análise documental e de fontes primárias, trago a pergunta de pesquisa ao estudo de caso: quais são as consequências da contratação da multinacional estrangeira Amazon - atual provedora de serviços de armazenamento e processamento de dados em nuvem para o Ministério da Saúde - para Saúde Pública no Brasil? / [en] This study presents a critical epistemology about the growing participation of technology giants in strategic sectors of the federal administration in the field of public health in Brazil. First, the development of the main Brazilian public policies on Digital Health is presented in chronological order, seeking to demonstrate its evolution and promotion of private capital participation in the area, as well as the outsourcing of services. Subsequently, I mobilize the concepts of Digital Colonialism and Data Sovereignty to demonstrate what the opposition between them represents, and how this can be observed in practice, in the field of health. Finally, through document analysis and primary sources, I bring the research question to the case study: what are the consequences of hiring the foreign multinational Amazon - current provider of cloud data storage and processing services for the Ministry of Health - for Public Health in Brazil?