Ontario Health Study/Ontario Institute for Cancer Research (OICR) staff: A limited number of staff members from the Ontario Health Study and the OICR IT department will have access to your personal information.
Researchers: The Ontario Health Study expects to receive requests from researchers in Canada and other countries to access the Study’s data. All requests must pass a strict scientific and ethical review and receive approval before any data will be shared with a researcher. The data collected from you will only be disclosed to researchers once all information that directly identifies you has been removed. Researchers who are given access to the Ontario Health Study must sign a Data Access Agreement to ensure that no attempt is made to re-identify participants, and must provide a Certificate of Destruction for that data once the project has concluded.
Researchers who have received approval for a research study may wish to collect information from you that has not been collected as part of the Ontario Health Study. If this occurs, you will be contacted by the Ontario Health Study regarding the request. You have the option to participate in the research study or to refuse. A list of approved studies will be maintained on the OHS website for your information.
Research Ethics Board: The Research Ethics Board has the right to review Study data in order to ensure that the Ontario Health Study is following proper procedures.
Custodians of administrative health data: Over 89% of OHS participants consented to having certain personal identifiers (such as health card number, name, date of birth) linked to administrative data. This includes the Ontario Cancer Registry, and OHIP claims database. To complete this linkage, personal identifiers have been shared with Ontario Health (Cancer Care Ontario) and ICES. OHS participant identifiers are securely stored by Ontario Health (CCO) to allow OHS data to be linked to multiple databases held at Ontario Health (CCO). (See how researchers access Ontario Health (CCO) administrative data). Data linkage at ICES follows a different process that does require the identifiers to be stored. When OHS participants ask to withdraw from the Study and revoke their permission for the OHS to use their data for future research, the OHS ensures this withdrawal request is communicated to both Ontario Health (CCO) and ICES, as appropriate.