Unlocking First Nations health information through data linkage
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 measuri...
Published in: | International Journal of Population Data Science |
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2018
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Online Access: | https://research.bond.edu.au/en/publications/645b14eb-b8ca-4747-998f-fbb4079e879a https://doi.org/10.23889/ijpds.v3i1.450 https://pure.bond.edu.au/ws/files/38140339/Unlocking_First_Nations_health_information_through_data_linkage.pdf http://www.scopus.com/inward/record.url?scp=85079243365&partnerID=8YFLogxK |
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ftbondunivcris:oai:https://pure.bond.edu.au/:publications/645b14eb-b8ca-4747-998f-fbb4079e879a 2024-06-16T07:39:56+00:00 Unlocking First Nations health information through data linkage Walker, Jennifer Pyper, E. Jones, Carmen R. Khan, Saba Chong, N. Legge, D. Schull, M. J. Henry, D. 2018-05-22 application/pdf https://research.bond.edu.au/en/publications/645b14eb-b8ca-4747-998f-fbb4079e879a https://doi.org/10.23889/ijpds.v3i1.450 https://pure.bond.edu.au/ws/files/38140339/Unlocking_First_Nations_health_information_through_data_linkage.pdf http://www.scopus.com/inward/record.url?scp=85079243365&partnerID=8YFLogxK eng eng https://research.bond.edu.au/en/publications/645b14eb-b8ca-4747-998f-fbb4079e879a info:eu-repo/semantics/openAccess Walker , J , Pyper , E , Jones , C R , Khan , S , Chong , N , Legge , D , Schull , M J & Henry , D 2018 , ' Unlocking First Nations health information through data linkage ' , International Journal of Population Data Science , vol. 3 , no. 1 , 8 . https://doi.org/10.23889/ijpds.v3i1.450 article 2018 ftbondunivcris https://doi.org/10.23889/ijpds.v3i1.450 2024-05-22T23:57:13Z 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. Article in Journal/Newspaper First Nations Bond University Research Portal Canada Indian International Journal of Population Data Science 3 1 |
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Bond University Research Portal |
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ftbondunivcris |
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English |
description |
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. |
format |
Article in Journal/Newspaper |
author |
Walker, Jennifer Pyper, E. Jones, Carmen R. Khan, Saba Chong, N. Legge, D. Schull, M. J. Henry, D. |
spellingShingle |
Walker, Jennifer Pyper, E. Jones, Carmen R. Khan, Saba Chong, N. Legge, D. Schull, M. J. Henry, D. Unlocking First Nations health information through data linkage |
author_facet |
Walker, Jennifer Pyper, E. Jones, Carmen R. Khan, Saba Chong, N. Legge, D. Schull, M. J. Henry, D. |
author_sort |
Walker, Jennifer |
title |
Unlocking First Nations health information through data linkage |
title_short |
Unlocking First Nations health information through data linkage |
title_full |
Unlocking First Nations health information through data linkage |
title_fullStr |
Unlocking First Nations health information through data linkage |
title_full_unstemmed |
Unlocking First Nations health information through data linkage |
title_sort |
unlocking first nations health information through data linkage |
publishDate |
2018 |
url |
https://research.bond.edu.au/en/publications/645b14eb-b8ca-4747-998f-fbb4079e879a https://doi.org/10.23889/ijpds.v3i1.450 https://pure.bond.edu.au/ws/files/38140339/Unlocking_First_Nations_health_information_through_data_linkage.pdf http://www.scopus.com/inward/record.url?scp=85079243365&partnerID=8YFLogxK |
geographic |
Canada Indian |
geographic_facet |
Canada Indian |
genre |
First Nations |
genre_facet |
First Nations |
op_source |
Walker , J , Pyper , E , Jones , C R , Khan , S , Chong , N , Legge , D , Schull , M J & Henry , D 2018 , ' Unlocking First Nations health information through data linkage ' , International Journal of Population Data Science , vol. 3 , no. 1 , 8 . https://doi.org/10.23889/ijpds.v3i1.450 |
op_relation |
https://research.bond.edu.au/en/publications/645b14eb-b8ca-4747-998f-fbb4079e879a |
op_rights |
info:eu-repo/semantics/openAccess |
op_doi |
https://doi.org/10.23889/ijpds.v3i1.450 |
container_title |
International Journal of Population Data Science |
container_volume |
3 |
container_issue |
1 |
_version_ |
1802006742966468608 |