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Using Data Linkage to Identify First Nations Manitobans: Technical, Ethical, and Political Issues

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Abstract

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.

Résumé

Contexte

Le registre de Santé Manitoba n’identifie pas parfaitement les Manitobains membres des Premières nations, ce qui réduit la possibilité de décrire convenablement leur état de santé et leur utilisation des services de santé à l’aide de ce seul registre. Notre étude décrit la marche à suivre pour créer une base de données valide dont le Centre d’élaboration et d’évaluation de la politique des soins de santé du Manitoba (MCHP) se servirait pour produire un rapport représentatif.

Méthode

Le Système de vérification du statut (SVS) du Registre des Indiens est une base de données nationale qui renferme la liste complète des membres inscrits des Premières nations admissibles aux prestations en vertu de la Loi sur les Indiens. À la faveur de négociations avec le comité de l’Assembly of Manitoba Chiefs chargé de la recherche sur l’information sanitaire, du ministère des Affaires indiennes et du Nord canadien, de la Direction générale de la santé des Premières nations et des Inuits (DGSPNI), de Santé Manitoba et du MCHP, les fichiers du SVS ont été reliés au registre de Santé Manitoba. Sur les 116 177 dossiers du SVS et les 5 803 dossiers des inscrits décédés, nous avons pu relier 97 635 dossiers au registre de Santé Manitoba.

Résultats

La concordance obtenue était de 99 % pour le sexe, de 70 % pour le nom de famille, de 94 % pour le prénom et de 96 % pour l’année de naissance. Cela représente au total une baisse de 20 % par rapport au nombre de dossiers dans le Registre des Indiens. Cette baisse était supérieure pour les femmes, les personnes âgées et les résidents des régions du Sud.

Conclusion

Ce maillage a représenté une hausse de 20 % par rapport aux seules données de Santé Manitoba. L’impossibilité d’apparier tous les dossiers s’explique par plusieurs facteurs. Tout d’abord, les personnes affiliées à une bande manitobaine mais vivant hors de la province n’ont pas pu être reliées au registre de Santé Manitoba. Les membres des Premières nations vivant au Manitoba mais affiliés à une bande non manitobaine n’apparaissaient pas non plus dans le fichier obtenu. Enfin, les naissances, les décès et les changements de noms après le mariage pourraient être sous-déclarés dans le Registre des Indiens. Notre maillage a néanmoins permis au MCHP de dessiner un portrait plus exact de l’état de santé des Premières nations et de leur utilisation des services de santé que ce qui aurait été disponible autrement. Il serait bon d’apparier en permanence les données du Registre des Indiens avec celles de Santé Manitoba et d’autres bases de données semblables ailleurs au Canada.

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Authors and Affiliations

  1. Manitoba Centre for Health Policy, Department of Community Health Sciences, University of Manitoba, 4th Floor, Room 408, 727 McDermot Avenue, Winnipeg, MB, R3E 3P5, Canada

    Laurel S. Jebamani MSc, Charles A. Burchill MSc &  Patricia J. Martens PhD

Authors
  1. Laurel S. Jebamani MSc
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  2. Charles A. Burchill MSc
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  3. Patricia J. Martens PhD
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Corresponding author

Correspondence to Patricia J. Martens PhD.

Additional information

The full report “The Health and Health Care Use of Registered First Nations People Living in Manitoba: A Population-Based Study” on which this article is based is available from the Manitoba Centre for Health Policy at the above address or on-line at: http://www.umanitoba.ca/centres/mchp/reports.htm

Acknowledgements of Sources of Support: This work was supported as part of a project on First Nations health in Manitoba, one of several projects undertaken each year by the Manitoba Centre for Health Policy under contract to Manitoba Health. The results and conclusions are those of the authors and no official endorsement by Manitoba Health was intended or should be inferred. Dr. Martens is also supported by a Community Alliances for Health Research Program grant from the Canadian Institutes of Health Research (CIHR), as well as a CIHR New Investigator’s Award. The authors are indebted to Health Information Services, Manitoba Health, First Nations and Inuit Health Branch, Indian and Northern Affairs Canada and the Office of Vital Statistics in the Agency of Consumer and Corporate Affairs for the provision of data. Thanks to the Health Information Research Committee of the Assembly of Manitoba Chiefs, who acted as the Working Group (1999-2002) for The First Nations Report from which this paper was derived.

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Jebamani, L.S., Burchill, C.A. & Martens, P.J. Using Data Linkage to Identify First Nations Manitobans: Technical, Ethical, and Political Issues. Can J Public Health 96 (Suppl 1), S28–S32 (2005). https://doi.org/10.1007/BF03405313

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