Why are data available only up to 2004?
The Ontario Cancer Registry staff must reconcile all data in the registry before it can be reported for any given year. The data from other sources must go through similar data quality controls. This ensures the quality of the data and accuracy of the statistics. Currently, Cancer Care Ontario can report data up to 2004.
What are aggregate data?
Aggregate data are summed and/or categorized anonymous data that has been analyzed and placed in a format that precludes further analysis (e.g. in tables or graphs) to rule out the possibility for identification of any individual subjects.
Can Cancer Care Ontario decline my request for aggregate data?
Cancer Care Ontario may decline a data request if Cancer Care Ontario does not have the data necessary to fill the request or if the disclosure of the data could potentially identify an individual. Cell sizes of five (5) or fewer, populations such as small cities or neighbourhoods, or data that Cancer Care Ontario has deemed to be potentially identifying will not be disclosed in order to protect the confidentiality of persons to whom the data relates.
In some cases, the Information Management Coordinator may defer the request because an annual, quarterly or semi-annual indicator is, or will be, available. The Information Management Coordinator will explain to the requestor when and how to access the indicator.
Cancer Care Ontario’s policy states that they do not release information in cell sizes of N=5 or smaller. What does this mean?
N=5 means that Cancer Care Ontario will not disclose aggregate data with counts smaller or equal to five (5). For example, “4 incidents of breast cancer in Simcoe County in 1992” is a data set that could not be disclosed. The policy is meant to protect the privacy of individuals who may be identified because they have a rare type of cancer or live in a small geographic area where such data has the potential to identify them. Cancer Care Ontario will also consider the group in which the count applies (i.e. the denominator) and generally does not disclose counts within a city or postal code. Cancer Care Ontario may disclose counts within a region, county or Local Health Integration Network.
Can researchers browse Cancer Care Ontario’s data holdings in order to determine whether Cancer Care Ontario has the data needed to conduct a study?
Researchers may not access identifiable data without Research Ethics Board and Cancer Care Ontario approval of their study. However, they can contact the Information Management Coordinator for several reasons:
- Find out more about the data Cancer Care Ontario holds;
- Request aggregate data through the data request process;
- Meet with the data steward responsible for the data holding for which the researcher will require data to learn more about what type of data is available: View Data Holdings
- Get an estimate of the cost to fill the request for budgeting purposes; or
- Get a preliminary opinion on whether the request is likely to be approved or what conditions must be met to approve the request.
Where can I find more information about Ontario Cancer Facts?
Ontario Cancer Facts are published monthly. For further information regarding Ontario Cancer Facts, send an email to CancerFacts@cancercare.on.ca or go to the Ontario Cancer Facts page of this web site.
Where can I find cancer statistics about the whole country?
Cancer Surveillance Online and the Canadian Cancer Statistics book include cancer statistics for all of Canada:
Where can I find more information on a specific type of cancer?
Cancer Care Ontario has a number of resources on specific types of cancer posted on our web site. We also recommend contacting the Cancer Information Service, toll-free in Canada, at 1-888-939-3333, or via e-mail to info@cis.cancer.ca.
Where can I find information on clinical trials related to my cancer or the cancer of a family member?
OntarioCancerTrials.ca has a complete list of cancer trials in Ontario. The Canadian Cancer Society also has clinical trial information and resources.
Where can I find someone to talk to about my cancer?
Contact your family physician, oncologist, or genetic counselor, or call the Cancer Information Service, toll-free in Canada, at 1-888-939-3333, Monday to Friday, 9 AM – 6 PM. You can also e-mail info@cis.cancer.ca. For more links, go to Patient Resources.
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