We encourage applicants to contact the Data Disclosure Team as early in the research approval process as possible. By contacting the team early, applicants will get a better understanding of data availability and its limitations, expected timelines and estimated costs associated with the data request.
Note: Even with this initial review by the Data Disclosure Team, the application package is not considered complete without all of the required documentation.
How the Process Works
A typical research data request requires input from a number of teams across CCO:
Once the completed application package is submitted, a feasibility assessment is conducted to ensure CCO has the ability to complete the request.
- The Data Disclosure Team then works with the research team who submitted the application to draft the dataset creation plan and estimate the cost of the request.The request is reviewed by the Data Disclosure Working Group, comprised of research, privacy and data subject matter experts.
- The working group recommends the request for approval by the Data Disclosure Subcommittee. Once approved, the research team signs the Research Data Disclosure Agreement. Once the agreement is signed, CCO analysts can begin the work. This may include creating a cohort for a study, extracting the data required, linking multiple datasets and quality assurance steps.
Dialogue with the research team may be required. Upon completion of the data extraction and quality checks, as well as payment by the applicant, the data is disclosed in a secure manner.
How Long the Process Takes
The time from intake to data disclosure will depend on several factors, including the completeness of the application package and the complexity of the request. A fulfillment time estimate will be provided as part of the dataset creation plan.
Requestors should plan for approximately 2 months from the submission of the application package to the approval of the request by the Data Disclosure Subcommittee. This length of time can be reduced if the Research Data Request Form is as complete as possible.
The complexity of a request is determined by:
- number of data sources required
- type of data required (some datasets are more complex than others)
- size of study cohort
- whether the cohort is generated by the Cancer Care Ontario analyst
- type of quality assurance steps required
For simple data requests, where the data is derived from a single dataset (e.g., the Ontario Cancer Registry only), the estimated fulfillment time is 60 business days from the signature of the Research Data Disclosure Agreement and payment of the administrative fee. For a complex request (where data is derived from multiple data sources and a cohort is generated by the CCO analyst), a fulfillment time estimate will be provided as part of the dataset creation plan.