Perspectives on Linkage Involving Indigenous data

Topic: Perspectives on Linkage Involving Indigenous data Indigenous populations across the globe are reaffirming their sovereignty rights in the collection and use of Indigenous data. The Indigenous data sovereignty movement has been widely influential and can be unsettling for those who routinely use population-level linked data that include Indigenous identifiers. Ethical policies that stipulate community engagement for access, interpretation and dissemination of Indigenous data create an enabling environment through the critical process of negotiating and navigating data access in partnership with communities. This session will be designed to create space for leading Indigenous voices to set the tone for the discussion around Indigenous population data linkage. Objectives: • To provide participants with an opportunity to build on the themes of Indigenous Data Sovereignty presented in the keynote session as they apply to diverse Indigenous populations. • To explore approaches to the linkage of Indigenous-identified population data across four countries, including First Nations in three Canadian regions. • To share practical applications of Indigenous data sovereignty on data linkage and analysis and discussion. • To center Indigenous-driven data linkage and research. Facilitator: Jennifer Walker. Canada Research Chair in Indigenous Health, Laurentian University and Indigenous Lead, Institute for Clinical Evaluative Sciences. Collaborators: • Alberta: Bonnie Healy, Tina Apsassin, Chyloe Healy and William Wadsworth (Alberta First Nations Information Governance Centre) • Ontario: Carmen R. Jones (Chiefs of Ontario) and Jennifer Walker (Institute for Clinical Evaluative Sciences) • British Columbia: Jeff Reading (Providence Health Centre) and Laurel Lemchuk-Favel (First Nations Health Authority) • Australia: Raymond Lovett (Australian National University) • Aotearoa / New Zealand: Donna Cormack (University of Otago) • United States: Stephanie Rainie and Desi Rodriguez-Lonebear (University of Arizona) Session format: 90 minutes Collaborators will participate in a round-table introduction to the work they are doing. Collaborators will discuss the principles underlying their approaches to Indigenous data linkage as well as practical and concrete solutions to challenges. Questions to guide the discussion will be pre-determined by consensus among the collaborators and the themes will include: data governance, community engagement, Indigenous-led linkage and analysis of data, and decision-making regarding access to linked data. Other participants attending the session will be encouraged to listen and will have an opportunity to engage in the discussion and ask questions. Intended output or outcome: The key outcome of the session will be twofold. First, those actively working with Indigenous linked data will have an opportunity for an in-depth and meaningful dialogue about their work, which will promote international collaboration and sharing of ideas. Second, those with less experience and knowledge of the principles of Indigenous data sovereignty and their practical application will have an opportunity to listen to Indigenous people who are advancing the integration of Indigenous ways of knowing into data linkage and analysis. The output of the session will be a summary paper highlighting both the diversity and commonalities of approaches to Indigenous data linkage internationally. Areas where consensus exists, opportunities for collaboration, and challenges will be highlighted

The SEEDS of Indigenous Population Health Data Linkage

Introduction Globally, 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. Objectives Centering 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. Methods During 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. Results The 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. Conclusion Each 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

First Nations emergency care in Alberta: descriptive results of a retrospective cohort study

Abstract Background Worse health outcomes are consistently reported for First Nations people in Canada. Social, political and economic inequities as well as inequities in health care are major contributing factors to these health disparities. Emergency care is an important health services resource for First Nations people. First Nations partners, academic researchers, and health authority staff are collaborating to examine emergency care visit characteristics for First Nations and non-First Nations people in the province of Alberta. Methods We conducted a population-based retrospective cohort study examining all Alberta emergency care visits from April 1, 2012 to March 31, 2017 by linking administrative data. Patient demographics and emergency care visit characteristics for status First Nations persons in Alberta, and non-First Nations persons, are reported. Frequencies and percentages (%) describe patients and visits by categorical variables (e.g., Canadian Triage and Acuity Scale). Means, medians, standard deviations and interquartile ranges describe continuous variables (e.g., age). Results The dataset contains 11,686,288 emergency care visits by 3,024,491 unique persons. First Nations people make up 4% of the provincial population and 9.4% of provincial emergency visits. The population rate of emergency visits is nearly 3 times higher for First Nations persons than non-First Nations persons. First Nations women utilize emergency care more than non-First Nations women (54.2% of First Nations visits are by women compared to 50.9% of non-First Nations visits). More First Nations visits end in leaving without completing treatment (6.7% v. 3.6%). Conclusions Further research is needed on the impact of First Nations identity on emergency care drivers and outcomes, and on emergency care for First Nations women

Impacts of racism on First Nations patients' emergency care: results of a thematic analysis of healthcare provider interviews in Alberta, Canada

Abstract Background First Nations people experience racism in society and in the healthcare system. This study aimed to document emergency care providers’ perspectives on care of First Nations patients. First Nations research partner organizations co-led all aspects of the research. Methods Sixteen semi-structured interviews were conducted with Alberta emergency department (ED) physicians and nurses between November 2019 and March 2020. Results ED providers reported that First Nations patients are exposed to disrespect through tone and body language, experience overt racism, and may be neglected or not taken seriously. They described impacts of racist stereotypes on patient care, and strategies they took as individuals to address patient barriers to care. Recognized barriers to care included communication, resources, access to primary care and the ED environment itself. Conclusions Results may inform the content of anti-racist and anti-colonial pedagogy that is contextually tailored to ED providers, and inform wider systems efforts to counter racism against First Nations members and settler colonialism within healthcare

Additional file 1: of Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol

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