Abstract
Linkage of data collected by large Canadian cohort studies with provincially managed administrative health databases can offer very interesting avenues for multidisciplinary and cost-effective health research in Canada. Successfully co-analyzing cohort data and administrative health data (AHD) can lead to research results capable of improving the health and well-being of Canadians and enhancing the delivery of health care services. However, such an endeavour will require strong coordination and long-term commitment between all stakeholders involved. The challenges and opportunities of a pan- Canadian cohort-to-AHD data linkage program have been considered by cohort study investigators and data custodians from each Canadian province. Stakeholders acknowledge the important public health benefits of establishing such a program and have established an action plan to move forward.
Key Words: Medical record linkage, data collection, public health
Résumé
Le couplage des données recueillies par de grandes études de cohortes canadiennes avec des données hébergées dans les bases de données administratives provinciales portant sur la santé peut offrir des pistes très intéressantes pour la multidisciplinarité et la rentabilité de la recherche en santé au Canada. L’analyse concomitante de données provenant d’études de cohortes et de bases de données administratives de santé peut conduire à des résultats de recherche pouvant faire progresser la santé et le bien-être des Canadiens et améliorer la prestation des services de soins de santé. Cependant, une telle initiative nécessitera beaucoup de coordination et un engagement à long terme entre tous les acteurs impliqués. Les défis et les opportunités d’un programme pancanadien de couplage de données ont été considérés par les chercheurs d’études de cohortes et les dépositaires de données de chaque province canadienne. Les parties prenantes reconnaissent l’importante contribution en santé publique d’établir un tel programme et ont mis en place un plan d’action pour aller de l’avant.
Mots Clés: couplage de dossiers médicaux, collecte de données, santé publique
Footnotes
See Appendix A for list of workshop participants.
Acknowledgements: The authors thank all data custodians and CLSA and CPTP investigators for participating in the workshop and providing invaluable feedback on this paper. Funds received from a Meetings, Planning and Dissemination grant from the Canadian Institutes of Health Research (Winter 2011 Competition) allowed us to organize the workshop of Canadian stakeholders. This work is also supported by Genome Canada, Genome Quebec, and the Canadian Partnership Against Cancer. Dr. Raina is the recipient of a Canada Research Chair in Geroscience and holds the Labarge Chair in Research and Knowledge Application for Optimal Aging at McMaster University.
Disclaimer: The interpretation and conclusions contained within this paper do not necessarily represent those of the various Ministries of Health or Data Protection Commissioners who participated in the Linkage Between Cohorts and Health Care Utilization Data: Meeting of Canadian Stakeholders workshop.
Conflict of Interest: None to declare.
References
- 1.Raina PS, Wolfson C, Kirkland SA, Griffith LE, Oremus M, Patterson C, et al. The Canadian Longitudinal Study on Aging (CLSA) Can J Aging. 2009;28(3):221–29. doi: 10.1017/S0714980809990055. [DOI] [PubMed] [Google Scholar]
- 2.Borugian MJ, Robson P, Fortier I, Parker L, McLaughlin J, Knoppers BM, et al. The Canadian Partnership for Tomorrow Project: Building a pan-Canadian research platform for disease prevention. CMAJ. 2010;182(11):1197–201. doi: 10.1503/cmaj.091540. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Holman CD, Bass AJ, Rosman DL, Smith MB, Semmens JB, Glasson EJ, et al. A decade of data linkage in Western Australia: Strategic design, applications and benefits of the WA data linkage system. Aust Health Rev. 2008;32(4):766–77. doi: 10.1071/AH080766. [DOI] [PubMed] [Google Scholar]
- 4.Roos LL, Brownell M, Lix L, Roos NP, Walld R, MacWilliam L. From health research to social research: Privacy, methods, approaches. Soc Sci Med. 2008;66(1):117–29. doi: 10.1016/j.socscimed.2007.08.017. [DOI] [PubMed] [Google Scholar]
- 5.Jutte DP, Roos LL, Brownell MD. Administrative record linkage as a tool for public health research. Annu Rev Public Health. 2011;32(1):91–108. doi: 10.1146/annurev-publhealth-031210-100700. [DOI] [PubMed] [Google Scholar]
- 6.Naess O, Søgaard AJ, Arnesen E, Beckstrøm AC, Bjertness E, Engeland A, et al. Cohort profile: Cohort of Norway (CONOR) Int J Epidemiol. 2008;37(3):481–85. doi: 10.1093/ije/dym217. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.El Emam K. Risk-based de-identification of health data. Security & Privacy, IEEE. 2010;8(3):64–67. doi: 10.1109/MSP.2010.103. [DOI] [Google Scholar]
- 8.Cavoukian A. Privacy by Design. Report of the Information & Privacy Commissioner Ontario, Canada. 2012. [Google Scholar]
- 9.Pencarrick Hertzman C, Meagher N, McGrail KM. Privacy by Design at Population Data BC: A case study describing the technical, administrative, and physical controls for privacy-sensitive secondary use of personal information for research in the public interest. J Am Med Inform Assoc. 2013;20(1):25–28. doi: 10.1136/amiajnl-2012-001011. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Karr AF, Fulp WJ, Vera F, Young SS, Lin X, Reiter JP. Secure, privacypreserving analysis of distributed databases. Technometrics. 2007;49(3):335–45. doi: 10.1198/004017007000000209. [DOI] [Google Scholar]
- 11.Wolfson M, Wallace SE, Masca N, Rowe G, Sheehan NA, Ferretti V, et al. DataSHIELD: Resolving a conflict in contemporary bioscience—performing a pooled analysis of individual-level data without sharing the data. Int J pidemiol. 2010;39(5):1372–82. doi: 10.1093/ije/dyq111. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.El Emam K, Samet S, Hu J, Peyton L, Earle C, Jayaraman GC, et al. A protocol for the secure linking of registries for HPV surveillance. PLoS ONE. 2012;7(7):e39915. doi: 10.1371/journal.pone.0039915. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Roos LL, Menec V, Currie RJ. Policy analysis in an information-rich environment. Soc Sci Med. 2004;58(11):2231–41. doi: 10.1016/j.socscimed.2003.08.008. [DOI] [PubMed] [Google Scholar]