Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and ( 2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people-and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.

Background: Indigenous people continue to experience high rates of multiple chronic conditions (MCC) at younger ages than other populations, resulting in an increase in health and social care needs. Those who provide services designed to address MCC for Indigenous communities require synthesized information to develop interventions that meet the needs of their older adult population. This review seeks to answer the research question: What are the health and social care needs, priorities and preferences of Indigenous older adults (living outside of long-term care settings) with MCC and their caregivers? Methods: A scoping review, guided by a refinement of the Arksey & O'Malley framework, was conducted. Articles were included if the authors reported on health and social care needs and priorities of older Indigenous adults. We also included articles that focused on Indigenous conceptions of wellness, resilience, well-being, and/or balance within the context of aging, and articles where authors drew from Indigenous specific worldviews, ways of knowing, cultural safety, cultural competence, cultural appropriateness, cultural relevance and community needs. Results: This scoping review included 9 articles that were examined using an Indigenous determinants of health (IDH) theoretical framework to analyze the needs of older adults and CGs. Five areas of needs were identified: accessible health services; building community capacity; improved social support networks; preservation of cultural values in health care; and wellness-based approaches. Conclusion: The review highlights key determinants of health that influenced older adults' needs: education and literacy, ethnicity, and social support/network (proximal); health promotion and health care (intermediate); and a combination of historical and contemporary structures (distal). The findings highlight the importance of local Indigenous knowledge and perspectives to improve accessibility of culturally relevant health and social services.

Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. There are dual concerns about the availability and suppression of COVID-19 data; due to historic and ongoing racism and exclusion, publicly available data can be both beneficial and harmful. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples on their own terms to improve access to and use of data for effective public health responses to COVID-19.

No abstract

No abstract

First Nations people in Canada have demonstrated and continue to demonstrate persistent and resilient cultural, linguistic, and traditional endurance: survivance. The devastation resulting from centuries of health pandemics such as smallpox, influenza, cholera, tuberculosis, measles, and scarlet fever reinforce the ongoing resilience of First Nations people, cultures, and traditions in Canada. Despite the history of pandemic-related trauma and a myriad of social, political, environmental, and health challenges, as well as the added burden that COVID-19 is placing on the healthcare system in Canada, First Nations’ organizations and leadership are enacting their inherent rights to sovereignty and governance. While First Nations are bracing for the expected negative impacts of COVID-19, they are doing so in ways that respect and honor their histories, cultures, languages, and traditions. First Nations are acting to protect some of the most vulnerable people in their communities including elders, knowledge keepers, and storytellers who carry with them irreplaceable traditional and cultural knowledges.

IntroductionGlobally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage. ObjectivesCentering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data. MethodsDuring the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data. ResultsThe SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states. ConclusionEach of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations.

No abstract