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Using data linkage to identify First Nations Manitobans: technical, ethical, and political issues
Laurel S Jebamani1, Charles A Burchill, Patricia J Martens
1Manitoba Centre for Health Policy, Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba.
Summary
Linking the Indian Registry with Manitoba Health data improved First Nations health records by 20%. This enhanced database provides a more accurate picture of First Nations health status and service use in Manitoba.
Area of Science:
- Public Health
- Health Informatics
- Indigenous Health Research
Background:
- The Manitoba Health Registry undercounts First Nations individuals, limiting accurate health status and service utilization analysis.
- Accurate identification is crucial for understanding and addressing health disparities among First Nations populations in Manitoba.
Purpose of the Study:
- To describe the process of creating a validated database for First Nations Manitobans by linking two key data sources.
- To improve the accuracy of population-based health reporting for First Nations in Manitoba.
Main Methods:
- A linkage was established between the national Indian Registry's Status Verification System (SVS) and the Manitoba Health Registry.
- Collaboration involved the Assembly of Manitoba Chiefs, Indian and Northern Affairs Canada, FNIHB, Manitoba Health, and MCHP.
- 97,635 individuals were successfully linked, out of 116,177 SVS records and 5,803 deceased records.
Main Results:
- The linkage achieved high match rates: 99% for gender, 94% for given name, and 96% for birth year.
- The combined dataset represented a 20% increase in records compared to the Indian Registry alone.
- Record linkage was less successful for females, older individuals, and those from southern regions.
Conclusions:
- The linkage significantly enhanced the Manitoba Health data, providing a more comprehensive view of First Nations health.
- Limitations in linkage may be due to individuals living outside the province, non-Manitoba Band affiliations, and under-reporting of life events to the Indian Registry.
- This methodology enables more accurate population-based health reporting and is encouraged for similar initiatives across Canada.