Suchergebnisse

IntroductionIn Ontario, First Nations are increasingly seeking population-level data about the health of their citizens. However, First Nations people are not readily identified in standard health administrative data and indirect strategies, such as the use of on-reserve addresses, are limited in scope and validity.
Objectives and ApproachThe Chiefs of Ontario entered into a Data Governance Agreement with the Institute for Clinical Evaluative Sciences (ICES) that enabled the linkage of the federal Indian Register (IR) to data at ICES. This study examined the impact of the IR linkage on First Nations population estimates and location of residence, measured by postal code or residence code. Overall, and for each First Nation community in Ontario, we compared First Nations population estimates from the ICES data with and without the IR linkage to estimates available from Indigenous and Northern Affairs Canada (INAC).
ResultsWithout the IR, using only Ontario residence codes or postal codes that were unique to a given community, 62,242 individuals were identified as living in First Nations communities. This is approximately 30% lower than the current INAC on-reserve population estimate of 92,234 for First Nations communities in Ontario. Adding the IR allowed the use of non-unique postal codes as well, resulting in the identification of an additional 15,183 First Nations individuals. It also allowed the identification of over 113,000 First Nations individuals who live outside of First Nations communities, especially in urban areas. Finally, the combination of residence information and the IR permits communities to identify their registered member living within and outside their communities.
Conclusion/ImplicationsUsing the IR in combination with geographic residence information, made possible through the Data Governance Agreement signed between Chiefs of Ontario and ICES, will provide First Nations communities with more accurate and complete population estimates, which is key to the production of useful and relevant First Nations-specific health research.

IntroductionGovernance of First Nations data and information requires important considerations that go beyond those typically used in research. Researchers are generally not trained in how to work appropriately within the realm of First Nations data. Further, while Canadian legislation protects individual privacy, First Nations' community privacy is not protected.
Objectives and ApproachThe OCA® principles were created to fill these identified gaps. OCAP® is an acronym that outlines principles regarding the collection, use, and disclosure of data or information regarding First Nations. The letters in OCAP® describe four key principles: Ownership, Control, Access and Possession.
ResultsFirst Nations OCAP® principles are beginning to make a paradigm shift in research. This shift in applying OCAP® is changing the standard for First Nations' data and information. These principles give First Nations sovereignty over their data and information when applied appropriately. The principles go beyond the protection of individual privacy to include the additional consideration of community privacy, a vital issue when working with First Nations' data.
Conclusion/ImplicationsOCAP®, when effectively applied, is a bridging tool for both First Nation communities and researchers to engage in relevant, reciprocal, and practical research projects to tell a story, provide insight, and effect policy change.

IntroductionIndigenous people worldwide are overrepresented and adversely effected by diabetes. Peripheral arterial disease and amputation are among the most feared complications of diabetes, leading to profound impacts on patients' quality of life. This study linked population-level healthcare data to assess the risk of peripheral arterial disease among First Nations people in Ontario with diabetes.
Objectives and ApproachWe linked individual-level population-based healthcare administrative datasets with the Indian Register. The latter provides information on all registered or Status First Nations people in Canada. We compared First Nations people with diabetes with other people in Ontario with diabetes . Age and sex-adjusted rates peripheral revascularization procedures and lower-extremity amputations were calculated for each 12-month period from April 1, 1995, to March 31, 2015. Mortality among those with amputation was determined.
ResultsFirst Nations people received revascularization procedures at a comparable rate to other people in Ontario. However, they had lower-extremity amputations at 3- to 5-times the frequency of other Ontario residents. First Nations people had increased mortality after lower-extremity amputation (adjusted hazard ratio 1.15, 95% confidence interval 1.05 to 1.26), with median survival of only 3.5 years.
Conclusion / ImplicationsFirst Nations people with diabetes in Ontario had a comparable rate of revascularization but a markedly increased risk for lower-extremity amputation compared to other people in Ontario. This discordance suggests that peripheral arterial disease may be underdiagnosed or undertreated among First Nations people in Ontario, and demonstrates an important health inequity faced by First Nations people.

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 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.
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.

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

Topic: Perspectives on Linkage Involving Indigenous dataIndigenous 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 minutesCollaborators 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.