ORCID Profile
0000-0002-3100-5336
Current Organisations
University of Oxford
,
PicnicHealth
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Publisher: Longwoods Publishing
Date: 20-01-2018
Abstract: Indigenous data governance principles assert that Indigenous communities have a right to data that identifies their people or communities, and a right to determine the use of that data in ways that support Indigenous health and self-determination. Indigenous-driven use of the databases held at the Institute for Clinical Evaluative Sciences (ICES) has resulted in ongoing partnerships between ICES and erse Indigenous organizations and communities. To respond to this emerging and complex landscape, ICES has established a team whose goal is to support the infrastructure for responding to community-initiated research priorities. ICES works closely with Indigenous partners to develop unique data governance agreements and supports processes, which ensure that ICES scientists must work with Indigenous organizations when conducting research that involves Indigenous peoples.
Publisher: Swansea University
Date: 22-05-2018
Abstract: IntroductionThe 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. ObjectivesTo describe the linkage of the IR database to the Ontario Registered Persons Database (RPDB) within the context of Indigenous data sovereignty principles. MethodsDeterministic 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. ResultsOverall, 201,678 in iduals 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 in iduals 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. Conclusions 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.
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Evelyn Pyper.