Using Data Linkage to Identify First Nations Manitobans: Technical, Ethical, and Political Issues
Jebamani, Laurel S., Burchill, Charles A., Martens, Patricia J., Canadian Journal of Public Health
Background: The Manitoba Health Registry does not fully identify First Nations Manitobans, impacting the ability to adequately describe their health status and use of health services using this data source alone. This paper describes the processes in producing a valid database for use in a population-based report by the Manitoba Centre for Health Policy (MCHP).
Methods: The Indian Registry's Status Verification System (SVS) file is a national database containing a complete list of Registered First Nations eligible for benefits through the Indian Act. Through negotiations with the Assembly of Manitoba Chiefs' Health Information Research Committee, Indian and Northern Affairs Canada, FNIHB, Manitoba Health, and MCHP, a linkage of the SVS files and Manitoba Health's Registry was accomplished. Of the 116,177 SVS records and 5,803 deceased records, 97,635 individuals linked to the Manitoba Health Registry.
Results: There was a 99% match on gender, 70% match on surname, 94% match on given name, and 96% match on birth year. The total represents a 20% decrease in records from the Indian Registry. The decrease was greater for females, older people and those from southern areas.
Conclusion: The linkage resulted in a 20% increase over Manitoba Health data alone. Our inability to link all of the records may be due to several factors. Individuals with a Manitoba band affiliation living outside of the province could not be linked to the Manitoba Health Registry. First Nations living in Manitoba but affiliated with a non-Manitoba band would not have been in the file obtained. Finally, births, deaths and surname change after marriage may be under-reported to the Indian Registry. This linkage enabled MCHP to provide a more accurate picture of First Nations health status and use of health care services than otherwise would have been available. Ongoing linkages with Manitoba Health data, as well as similar linkages elsewhere in Canada, are encouraged.
MeSH terms: Indians, North American; health services research; medical records; medical record linkage; Manitoba; Canada
First Nations and Aboriginal Canadians have been shown to suffer more from various health problems than the general population.1'6 Higher premature mortality rates and lower life expectancies have also been found among the First Nations population of Canada.7 However, there are concerns with the quality of data identifying people as First Nations, both in Canada and the United States. In the United States, Indian Health Services data are commonly used in First Nations health research. However, data from Indian Health Services are limited to those who use their clinics,8,9 cover only on-reserve American Indians,lu and include only 33 of the 50 states." Indian Health Services data have been estimated to cover approximately 25% of the American Indian population of the United States." In Canada, many studies examine small samples of individual First Nations communities12 or groups of communities.13 Others rely on self-reports of First Nations status from the Canada Census.14 However, Census data significantly undercount First Nations Canadians.15 One of the reasons for this undercounting is that some First Nations communities refuse to participate in the Canada Census; in 2001, a total of 30 communities declined to participate in the Census.14
The Manitoba Centre for Health Policy (MCHP) maintains the Population Health Research Data Repository of all residents of Manitoba who receive universal health insurance coverage. This information is anonymous, with no names and addresses, but contains demographic information (age, sex, region of residence) and an encrypted identification number for purposes of cross-linkage. Other files contained in the Repository (including vital statistics, hospital, medical claims, nursing home, and home care data) use the same number to track use of services. The research repository documents almost every health care contact for the Manitoba population, making it possible to describe the health status or health care use of all residents of a geographical region, whether that be a Tribal Council area, a Regional Health Authority area, or the entire province. …