Who may request data from CCO?
- The media or government may request aggregate data for the purposes of policy analysis or reporting.
- Regional Cancer Programs (RCPs), pharmaceutical companies, and other health care organizations may request aggregate data in order to perform cancer system planning, monitoring or management activities.
- Hospitals, laboratories and RCPs may request back a subset of the data they originally provided Cancer Care Ontario.
- Registries (e.g., CIHI) and organizations such as Statistics Canada may request scheduled disclosures that are authorized by law and described in data sharing agreements.
- Genetic consultants working on behalf of individuals may request access to pathology reports to research a patient’s cancer history.
- Researchers may request data for research.
- Cancer Care Ontario staff without direct access to a data holding may request aggregate data in order to support their program or project.
There are three ways to request data from CCO:
1. Apply for access to iPort™.
iPort™ is CCO’s secure, web-based analytic tool that provides planners and policy-makers with instant access to clear and accurate provincial and LHIN level cancer information.
Request access to iPort
2. Order SEER Stat CDs (March 2009 Release).
SEER*Stat CDs contain detailed incidence and mortality data as well as the software for running analysis and statistics on the data. To order a SEER*Stat CD, you must download and sign a confidentiality agreement and fax it to the Information Management Coordinator at 416-971-6888. The CD will be mailed to you within 10-14 business days.
3. Request other data.
All other requests for information are made to the Information Management Coordinator, Fax: 416-971-6888; e-mail: DataRequest@cancercare.on.ca .
Processing Time
The Information Management Coordinator reviews external requests for data, unrelated to research, on a weekly basis. Requests received before the end of the business day Tuesday will be reviewed by the end of the week and the requestor will receive an estimate of the time required to fill the request. Depending on the complexity of the request, data requests may take a few days or several weeks to fill.
The Data Access Committee reviews data requests for research on a monthly basis. Requests and accompanying research protocols and Research Ethics Board approval letters received before the 20th of the month will be reviewed at the subsequent Data Access Committee meeting. If approved, a letter will be sent to the researcher within three (3) business days of the meeting detailing the conditions of the approval, if any, and the estimated time and cost to fill the data request. The researcher will also be sent a confidentiality agreement that must be signed by the principal and co-investigators before the data can be disclosed.
Approval
Cancer Care Ontario considers a number of factors when reviewing data requests including whether the request:
- Can be filled with the data from our data holdings;
- Is consistent with our Privacy Policy and applicable privacy legislation; and
- Is in line with our mandate to share data for such requests.
Data requests for research undergo additional reviews including patient contact, consent considerations, and methodological and scientific review of the research protocol.
Fees
Cancer Care Ontario charges requestors for time spent by clerical staff and analysts on research data requests and data requests that take more than two (2) hours to fill. The Information Management Coordinator will provide the requestor with an estimate. The current rates are as follows:
- Clerical staff: $50/hour
- Analysts: $100/hour
Cancer Care Ontario also charges genetic consultants for pathology reports. Rates for 2008 are as follows:
- $10/pathology request*
- $2/pathology report
*Requests are on a per patient basis
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