Researchers access to linked health administrative databases in Sweden and Canada

The researchers have access to the following linkable Swedish databases: i) National Patient Register (NPR, maintained by the National Board of Health and Welfare, inpatient and specialized outpatient care, diagnoses); ii) disability pensions and sickness absences from the MiDAS register (maintained by the Swedish Social Insurance Agency); iii) Prescribed Drug Register (PDR, maintained by the National Board of Health and Welfare, prescription drug purchases); iv) Causes of Death Register (maintained by the National Board of Health and Welfare; v) the LISA register (maintained by Statistics Sweden, demographic characteristics). All Swedish residents have been assigned a unique personal identification number which is utilized in the linkage of Sweden registers. For each study accepted by institutions ethics committees, researchers are provided with a pseudonymised large dataset for analysis.

 

The Quebec’s Chronic Disease Surveillance System comprised the linkage through provincial health number of 5 databases: i) physician billing (specialists and GPs; settings, diagnosed, procedures); ii) hospital separations; iii) public medication insurance; iv) health plan registration (age; sex; local area; 98% of the population is registered); v) death and causes. Linkage is done by the physician billings agency and sent to the Quebec’s public health institute (INSPQ) without personal identifiers of individuals. INSPQ officers operate the maintenance, updates and exploitation of the databases in the secure perimeter of Quebec’s offices. The Quebec’s Private Information Commission has authorized the exploitation of the databases by INSPQ for its surveillance of chronic disorders mandate, but also to collaborate with academic researchers and publicly funded research networks. Analysis can only be done in the secure perimeter in Quebec by INSPQ statisticians or vetted students and researchers; all outputs to outside academic research groups must be verified by INSPQ officers for confidentiality conformity to security rules.