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Addressing multi-region data linkage needs through data sharing agreements – Three Canadian initiatives.

Donna Curtis Maillet, Ted McDonald · International Journal of Population Data Science · 2022

ObjectivesData sharing and administrative data access for multi-jurisdictional research must accommodate all local requirements for the protection of personal information and personal health data. Navigating the different safeguards for data sharing found in all relevant Canadian provincial and territorial legislation requires exploring innovative, privacy compliant solutions.
 ApproachHealth Data Research Network Canada (HDRN Canada) and one of its provincial data centre partners, New Brunswick Institute for Research, Data and Training (NB-IRDT), are undertaking unconventional approaches to data sharing that balance legislative compliance and data access needs.  Three approaches are being pursued: harmonizing data sharing agreements between a national longitudinal study and 10 provincial data centres; facilitating 4 individual data sharing agreements with one regional cohort of a nationwide study; and coordinating data sharing between 4 provincial government departments and one national data centre. Each approach has unique features that presented problems needing innovative resolutions.
 ResultsThe experiences and challenges of these three approaches to data sharing for

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