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Statement of Information Practices
 

Who is Cancer Care Ontario?

Cancer Care Ontario (CCO) is the provincial agency responsible for continually improving cancer services. Formally launched and funded by the Ontario government in 1997, CCO is governed by the Cancer Act (Ontario). Further, as an Operational Service Agency of the Ontario government, CCO’s mandate is determined pursuant to a Memorandum of Understanding (MOU) between CCO and the Ministry of Health Long-Term Care (MOHLTC) dated December 2, 2009.

As the provincial agency responsible for continually improving cancer services, and the Ontario Government’s cancer advisor, CCO:

  • Directs and oversees close to $950 million public health care dollars to hospitals and other cancer care providers to deliver high quality, timely cancer services;
  • Implements provincial cancer prevention and screening programs designed to reduce cancer risks and raise screening participation rates;
  • Works with cancer care professionals and organizations to develop and implement quality improvements and standards;
  • Uses electronic information and technology to support health professionals and patient self-care and to continually improve the safety, quality, efficiency, accessibility and accountability of cancer services;
  • Plans cancer services to meet current and future patient needs, and works with health care providers in every Local Health Integration Network (LHIN) to continually improve cancer care for the people they serve; and
  • Rapidly transfers new research into improvements and innovations in clinical practice and cancer service delivery.

In addition to cancer, CCO has other core lines of business including supporting and hosting the provincial Access to Care (ATC) program, which is a part of the Government of Ontario’s Wait Times Information Strategy (WTIS).

CCO has also worked with renal leadership in Ontario to operate the Ontario Renal Network (ORN). In 2010, the MOHTLC formally transferred the provincial oversight and co-ordination of the Chronic Kidney Disease (CKD) Management Program to the ORN under the auspices of CCO.

CCO also administers the Provincial Drug Reimbursement Program (PDRP), which includes the New Drug Funding Program (NDFP), the Evidence Building Program (EBP), and the Case-by-Case-Review Program (CBCRP) for cancer drugs, on behalf of the MOHLTC. Beyond CBCRP, CCO offers ad-hoc support (e.g., reviewer identification) to out-of- country (OOC) requests when required for non-drug funding requests, such as cancer-related tests, radiation, and surgery.

Each of these programs is governed by separate accountability agreements between CCO and the MOHLTC.

In order to fulfill its mandate, CCO requires access to personal health information (PHI) from across Ontario. CCO derives its authority to collect, use, and disclose this information from its designations under Ontario’s Personal Health Information Protection Act, 2004 (PHIPA).

Where does Cancer Care Ontario get personal health information?

CCO collects personal health information from different sources depending on the data holding but, in general, CCO collects most of its information from facilities such as hospitals, clinics, independent health facilities and laboratories, classified under the Personal Health Information Protection Act, 2004 (PHIPA) as "health information custodians".

CCO also obtains data from the Ontario Ministry of Health and Long-Term Care (MOHLTC), and other organizations, such as the Canadian Institute for Health Information and the Office of the Registrar General of Ontario.

Additionally, CCO collects personal information, such as name, address, and date of birth, along with personal health information, including an individual’s health insurance number, directly from individuals in relation to CCO’s Cancer Screening Program.  This information is collected for purposes of authenticating individuals who contact CCO for purposes such as opting-out of screening-related correspondence, or correcting an individual’s personal information.

What types of personal health information does Cancer Care Ontario collect?

With the exception of personal health information collected in respect of (a) the implementation of the MOHLTC’s Access to Care (ATC) strategy and (b) the Ontario Renal Network (ORN), most of CCO's data are related to cancer. For example, the data may be related to expenditures for clinics or services or the data may be related to clinical information such as the type of cancer diagnosed, its location, its size, as well as the treatment or services provided. This data may include both confirmed cases of cancer and cancer screening data. Cancer screening data may include information relevant to the early detection of cancer or the risks of developing cancer. 

For the purposes of the ATC, CCO collects personal health information in respect of four initiatives designed to reduce wait times and to improve patients’ access to health care services:: Surgery and Diagnostic Imaging Wait Times (WTIS), Surgical Efficiency Targets Program (SETP), Emergency Room National Reporting System Initiative (ERNI), and Alternate Level of Care (ALC).

For the purposes of the ORN, CCO collects personal health information for the management and coordination of the Provincial Chronic Kidney Disease (CKD) program. In particular, CCO uses renal personal health information collected from CKD service providers to effectively organize and manage the delivery of renal services in Ontario.

How does Cancer Care Ontario use personal health information?

CCO uses the information it collects to:

  1. Plan and manage the cancer system in Ontario. This includes:
    • Studying and reporting on patterns of cancer in the province. For example, using data collected over many years, CCO is able to report on:
      1. whether the incidence of cancer in general, or any specific type of cancer, is increasing, decreasing or remaining stable;
      2. survival rates for different types of cancer, that is how long people with certain types of cancer can expect to live and if survival is changing over time;
      3. the prevalence of cancers, that is how many people are living with cancer in Ontario; and
      4. relationships between sex, age, environmental factors or geographic locations and cancer.
    • Evaluating the effects of early diagnosis and treatment;
    • Studying service delivery and utilization;
    • Estimating current and future needs for cancer services;
    • Studying wait times for cancer surgery.
  2. Operate Ontario’s cancer screening program, which offers certain groups in Ontario the opportunity to get regularly tested, or screened, for three types of cancer: breast cancer, cancer of the lower parts of the bowel, called “colorectal cancer,” and cancer of the cervix, called “cervical cancer.” CCO sends letters about cancer screening to the following groups of people:
    • men and women aged 50 to 74 (to get screened for colorectal cancer);
    • women aged 50 to 74 (to get screened for breast cancer);
    • women aged 21 to 69 ( to get screened for cervical cancer);
  3. Develop and test information technology (IT) solutions (e.g., computer applications, web portals) in respect of health system projects and programs managed by CCO.
  4. Support health research.
  5. Manage the following ATC initiatives:
    • WTIS: ATC uses personal health information under the WTIS initiative to reduce wait times by providing clinicians and health care decision makers with the information they need to more effectively manage wait times at the organizational, regional, and provincial level;
    • SETP: ATC uses personal health information under the SETP initiative to enable Ontario hospitals to compare their performance with that of their peers and identify areas of surgical improvements;
    • ERNI: ATC uses personal health information under the ERNI initiative to improve the performance and timeliness of access to emergency rooms in Ontario;
    • ALC: ATC uses personal health information to under the ALC initiative to analyze near real-time wait time data in acute care and post-acute care hospitals in Ontario.
  6. Manage the Ontario Renal Network Program: CCO provides aggregate reports based on the analysis of renal personal health information collected from the CKD service providers. Reports are disclosed to the kidney disease community which includes the MOHTLC, LHINs, nephrologists and dialysis centres.
  7. Operate CCO’s New Drug Funding Program (NDFP): Personal health information collected for NDFP is used to reimburse hospitals for patients who have met the eligibility criteria.

To whom does Cancer Care Ontario disclose personal health information?

CCO does not release personal health information with identifiers unless it is required or permitted to do so under the Personal Health Information Protection Act, 2004 (PHIPA). For example, CCO may disclose personal health information to researchers who comply with the research requirements set out in PHIPA, and if the research meets CCO’s scientific standards and is consistent with CCO’s mission and objectives.

Any personal health information that is disclosed must comply with CCO’s Data Use and Disclosure Standard.

CCO, in operating Ontario’s cancer screening program, discloses your personal health information to:

  • determine if you need to be screened for cancer;
  • send letters inviting or reminding you to be screened, telling you about your test results (e.g., Pap test results) or telling you to get more tests done;
  • make sure your doctor knows whether or not you have been screened or need more tests;
  • connect you with a doctor if you don’t have one and need to get more tests done;
  • help research studies on cancer screening; and
  • improve the management of health care in Ontario.

If you do not want to receive letters from Cancer Care Ontario about cancer screening, call us toll-free at 1-866-662-9233. You may change your decision at any time.

How can I get access to my information?

Generally, persons requesting access to their personal health information will be directed to those who originally collected the information - health information custodians who are directly involved in the care and treatment of patients (e.g., your doctor or other health care provider). Exceptions may be made in particular circumstances, such as, for example, where an individual is researching their family’s cancer history.

Review of Cancer Care Ontario’s information practices

CCO’s information practices must be reviewed and approved every three years by Ontario’s Information and Privacy Commissioner. The last three-year approval was received effective October 31, 2011. More information about the Ontario Information and Privacy Commissioner can be found at:

Office of the Information and Privacy Commissioner/Ontario
2 Bloor Street East, Suite 1400
Toronto, ON M4W 1A8
Telephone: 416-326-3333 or 1-800-387-0073
TDD/TTY: 416-325-7539

Who can I speak to if I have questions about CCO’s information practices and privacy program?

Questions related to CCO’s information practices or privacy program should be directed to:

CCO Privacy Office
Cancer Care Ontario
620 University Avenue
Toronto, ON M5G 2L7
Phone: 416.217.1816
Fax: 416.971.6888
Email: privacyandaccessoffice@cancercare.on.ca

Last modified: Mon, Mar 03, 2014
cancer care ontario | action cancer ontario   620 University Avenue Toronto Ontario, Canada M5G 2L7   Phone: 416.971.9800 Fax: 416.971.6888

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