Request Data

Data and analytics are integral to meeting the growing demand for greater health system accountability, better health outcomes and improved patient experience. We accept data requests for record-level data for research purposes and aggregate or de-identified record-level data for health system planning.

How to Access Data

• iPort™: portal for cancer system planners, decision-makers and clinicians
• Ontario Cancer Registry SEER*Stat Package: package for analysts to produce incidence and mortality statistics for studying the impact of cancer on the Ontario population
• Unique Data Requests: customized data sets from our extensive data holdings for aggregate data (categorized data that does not include personal health information) or de-identified, record-level data (data includes elements that may constitute identifying information or PHI) can be requested to support:
  • health system planning
  • research

Request Data for Health System Planning

1. Fill out the Health System Planning Data Request Form and submit it.
2. The Data Request Team will review your request form for completeness.
3. If all components of the form are complete, our data experts will review your request for feasibility. They may contact you for additional clarification.
4. Based on the complexity of your request, the Data Request Team will contact you to provide an estimated delivery date and next steps.

When you receive health system planning data from us, you will receive a release letter that sets out the terms and conditions for using the data. This letter will cover how you may use the data, how long you may retain the data and information about disclosure of the data.

Request Data for Research

We encourage applicants to contact the Data Disclosure Team using our contact form as early in the research approval process as possible for a better understanding of data availability, its limitations, expected timelines and estimated costs associated with the data request. 

Even with this initial review by the Data Disclosure Team, the application package is not considered complete without all of the required documentation.

• A typical research data request requires input from many teams across the organization.
• Once the completed application package is submitted, a feasibility assessment is conducted to ensure we have 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. If approved, the applicant is sent a copy of the Research Data Disclosure Agreement (RDDA). Once the cost estimate is signed and the RDDA is fully executed, our 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 and administrative fee 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, the complexity of the request, team capacity, and the number of requests currently in process. A fulfillment time estimate will be provided as part of the dataset creation plan.

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 Ontario Health analyst
• type of quality assurance steps required

The Data Disclosure Team will keep the applicant fully informed about fulfillment time during the process. If the applicant is providing the cohort, fulfillment time will be dependent on when we receive the cohort.

Patient Contact Studies

Patent Contact Studies (PCS) are for the recruitment of Ontarians in population-based health research. The Research Office at Ontario Health operates the PCS service and contacts prospective participants across the province by mail with an invitation to participate in a research study. If the individual consents, the researcher then follows up with the participant to carry out their study. Applications and review of PCS requests follow the same process as Research Data Requests (as described above).

More information about the PCS process or how to submit a PCS research data request can be obtained by contacting the Ontario Health (Cancer Care Ontario) Research Office: oh-cco_research@ontariohealth.ca

Required Documents for Research Data Requests

To complete the application package, the following documents are required:

• Data Request Form (email us at oh-cco_datarequest@ontariohealth.ca for the form)
• A research proposal or protocol that states that administrative data will be obtained from Ontario Health and includes a list of data assets being requested.
• A copy of the REB application form, including relevant requests for amendments.
• Components of the dataset creation plan, if applicable.

Cost Details

An administrative fee of $3,000 for a new request or an amendment fee of $1,500, and an hourly analytical fee of $75 per hour, will be applied to all research data requests. 

• The administrative fee accounts for the time and effort required for request intake, feasibility assessment as well as bringing research data requests before the Data Disclosure Subcommittee. The administrative fee is invoiced once approval has been granted. Payment is required before data extraction can begin.
• Amendments are requests to update, refresh or add variables to an existing request that we received. In these cases, the amendment fee ($1,500) accounts for the time and effort required for an initial feasibility assessment, completion of the Dataset Creation Plan, and bringing amended research data requests through the approval process. Where it applies, the amendment fee replaces the administrative fee. It must be paid before data extraction can begin.
• The analytical fee accounts for execution of the Dataset Creation Plan, which may include identifying study cohort(s), data extraction, linking multiple datasets and multiple quality assurance steps.

Where a complex data request involves a multi-staged Dataset Creation Plan, disclosure and invoicing may be broken out into stages. A staged schedule will be agreed upon by the Principal Investigator and Ontario Health in advance.

Estimating the Cost of Data Requests

Where requested, the Data Disclosure Team will support researchers in their grant submission by providing a cost estimate of the data request in advance of submission of the application package. The accuracy of the estimate will depend on the level of detail the requester provides about the data they will be requesting. The estimate will be based on the complexity of the data request (for example size of the cohort, number of databases to be linked, number of data elements).

The Data Disclosure Team will provide a cost estimate before the Data Disclosure Subcommittee reviews the request. For more complex requests, a cost estimate may not be provided until the Subcommittee approves the request. In all cases, the applicant must sign off on the cost estimate before the request is fulfilled. Please note, having a cost estimate does not guarantee approval by the Subcommittee.

Data and Guidelines

We use the Information and Privacy Commissioner Fact Sheets to guide the security and protection of our identifiable record-level data. All fact sheets can be found at the Information and Privacy Commissioner of Ontario website.

Preferred Method of Data Transfer

For the purposes of data disclosures, our method of choice is managed file transfer (MFT). MFT is used to provide secure external data transfers through a network. Users can send or receive files using a client application or via a web interface. During the intake phase of a data request, the Data Disclosure Team will provide applicants with a form to set up an MFT account. Once the account is set up, applicants will receive further instructions on how to access the data files.

Retaining and Destruction Data Rules

Records of personal health information (PHI) disclosed by Ontario Health for research purposes must not be retained for a period longer than the time set out in the approved research plan. Researchers must destroy all data provided by Ontario Health by the date indicated in the Research Data Request Form, typically within 5 years or upon project completion, whichever comes first.

The researcher should supply Ontario Health with a Certificate of Destruction setting out the date, time and location of the secure destruction, the method of secure destruction employed, as well as details of the items destroyed. The Certificate of Destruction will bear the signature of the persons who securely destroyed the information. A Certificate of Destruction from a third-party service provider will be acceptable if it contains all of the information required. For a copy of a Certificate of Data Destruction, contact our Data Request Team using the contact form.

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