Informed Consent
Consent from study participants is typically required for research studies where the intent is to link study data with data from an HDRN Canada Member Organization.
In these types of studies, the research team provides identifying information (e.g., health care number) to conduct linkage and linked data are 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’s Informed Consent Wording for Administrative Data Linking is a useful guide for researchers designing consent forms. Additional consent language guidance is also available from these HDRN Canada Member Organizations:
See also Manitoba’s Health Information Privacy Committee (HIPC) Requirements for the Collection and Use of PHINs for Research Purposes and HIPC Submission Information.
TIP: DASH can provide researchers with additional feedback and guidance on consent requirements after having reviewed your project details. For more information visit How DASH Works.