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Unlocking First Nations health information through data linkage.

Jennifer D Walker1,2, Evelyn Pyper1, Carmen R Jones3

  • 1Institute for Clinical Evaluative Sciences, Toronto, ON, Canada.

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Summary

First Nations data sovereignty is advanced by linking the Indian Register (IR) with Ontario health records. This linkage created Canada's largest First Nations health cohort, supporting community-led research and well-being initiatives.

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Area of Science:

  • Indigenous data sovereignty
  • Health informatics
  • Population health research

Background:

  • Recognizing the growing importance of Indigenous data sovereignty and Indigenous-led research in Canada and globally.
  • Highlighting the critical need for First Nations in Ontario to access demographic and health systems data for population health planning and outcome measurement.
  • Emphasizing how linking health data with the Indian Register (IR) under First Nations data governance has enabled data access for First Nations organizations and communities.

Purpose of the Study:

  • To detail the process of linking the Indian Register (IR) database with the Ontario Registered Persons Database (RPDB).
  • To conduct this linkage within the framework of Indigenous data sovereignty principles.
  • To establish a comprehensive dataset for First Nations health research.

Main Methods:

  • Employed deterministic and probabilistic record linkage techniques to connect the IR and RPDB.
  • Developed multiple approaches to establish a denominator for linkage rate calculation, given the absence of a pre-defined First Nations population in Ontario.
  • Focused on creating a robust linkage methodology suitable for Indigenous data governance.

Main Results:

  • Successfully linked 201,678 individuals from the national IR database to Ontario health records via the RPDB.
  • Confirmed that 90.2% of linked First Nations individuals had an Ontario affiliation (residency or community) at the time of IR registration.
  • Observed a significant improvement in linkage rates over time, increasing from 62.8% in the 1960s to 94.5% by 2012.

Conclusions:

  • The linkage established the largest First Nations health research cohort in Canada.
  • The linked IR and RPDB data are instrumental for First Nations communities.
  • This resource supports community-driven research addressing well-being, policy development, and healing initiatives.