Study participant consent is typically required for research studies where the intent is to link study data with data at an HDRN Canada Member Organization (“data centres”).
These types of studies will involve:
- the research team providing identifying information (for example, health care number) to conduct linkage, and;
- linked data to be subsequently disclosed to the research team.
Even with study participant consent, some organizations may not be able to share patient-level data outside of the province. This is especially true if agreements are in place between the HDRN Canada Member Organization and the original data providers that stipulate only releasing aggregate data.
HDRN Canada has prepared a guided resource for researchers on Informed Consent Wording for Administrative Data Linking. Please view the document here.
Additional consent language guidance is also available from our partner data centres:
- Population Data BC (PopData BC)
- Manitoba’s Health Information Privacy Committee (HIPC)
- University of Manitoba
- ICES
- Canadian Institute for Health Information (CIHI)
How can DASH help?
DASH can provide researchers with additional feedback and guidance on consent requirements after having reviewed your project details. Please visit the How DASH Works page for more information.