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Unlocking First Nations health information through data linkage.

ABSTRACT: Introduction:The importance of Indigenous data sovereignty and Indigenous-led research processes is increasingly being recognized in Canada and internationally. For First Nations in Ontario, Canada, access to routinely-collected demographic and health systems data is critical to planning and measuring health status and outcomes in their populations. Linkage of this data with the Indian Register (IR), under First Nations data governance, has unlocked data for use by First Nations organizations and communities. Objectives:To describe the linkage of the IR database to the Ontario Registered Persons Database (RPDB) within the context of Indigenous data sovereignty principles. Methods:Deterministic and probabilistic record linkage methods were used to link the IR to the RPDB. There is no established population of First Nations people living in Ontario with which we could establish a linkage rate. Accordingly, several approaches were taken to determine a denominator that would represent the total population of First Nations we would hope to link to the RPDB. Results:Overall, 201,678 individuals in the national IR database matched to Ontario health records by way of the RPDB, of which 98,562 were female and 103,116 were male. Of those First Nations individuals linked to the RPDB, 90.2% (n=181,915) lived in Ontario when they first registered with IR, or were affiliated with an Ontario First Nation Community. The proportion of registered First Nations people linking to the RPDB improved across time, from 62.8% in the 1960s to 94.5% in 2012. Conclusion:This linkage of the IR and RPDB has resulted in the creation of the largest First Nations health research study cohort in Canada. The linked data are being used by First Nations communities to answer questions that ultimately promote wellbeing, effective policy, and healing.

SUBMITTER: Walker JD

PROVIDER: S-EPMC7299468 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Unlocking First Nations health information through data linkage.

Walker Jennifer D JD Pyper Evelyn E Jones Carmen R CR Khan Saba S Chong Nelson N Legge Dan D Schull Michael J MJ Henry David D

International journal of population data science 20180522 1

<h4>Introduction</h4>The importance of Indigenous data sovereignty and Indigenous-led research processes is increasingly being recognized in Canada and internationally. For First Nations in Ontario, Canada, access to routinely-collected demographic and health systems data is critical to planning and measuring health status and outcomes in their populations. Linkage of this data with the Indian Register (IR), under First Nations data governance, has unlocked data for use by First Nations organiza ...[more]

PMID: 32935010

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Project description:IntroductionThis study investigated differences between rural Australian First Nations and non-First Nations survey respondents' perceptions of COVID-19-related risks and analysed other variables that could predict an exacerbation of anxiety related to COVID-19 harms.MethodsA cross-sectional online and paper survey of rural residents from the western regions of NSW, Australia, was conducted. Descriptive and multivariate statistical analyses were used to assess links between First Nations status and demographic measures including postcode, age, gender, education, rural or town/village location, proximity to medical services and living situation. The analysis included five items related to perceptions about COVID-19: perceived likelihood of contracting COVID-19 in the next 12 months, perceived harmfulness of the virus, how often people felt afraid, perception about respondents' ability to do something about the virus and perceived economic impacts of the pandemic.ResultsThere were significant differences between First Nations (n=60) and non-First Nations (n= 639) respondents across all sociodemographic categories. The results reflect a significantly higher level of anxiety among the First Nations Australians in the sample: they felt afraid more often, felt it was highly likely they would catch the virus and if they did catch the virus perceived that it would be very harmful. Living with children under eighteen years of age and in small rural towns were key factors linked to feeling afraid of COVID-19 and First Nations status.ConclusionHealth risk communication in pandemic response should include an equitable focus on rural areas, recognising that First Nations Australians are a significant proportion of the rural population with different risk factors and concerns than those of non-First Nations Australians. This principle of First Nations-led design is critical to all health policy and planning. The Australian Government should include rural areas in planning pandemic responses, recognising that First Nations populations are a significant proportion of the rural population creating syndemic conditions.

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Unlocking First Nations health information through data linkage.

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Unlocking First Nations health information through data linkage.

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