Who is Cancer Care Ontario?

Cancer Care Ontario (CCO) is the provincial agency responsible for continually improving cancer services. As the government’s cancer advisor, CCO:

• Directs and oversees close to $700 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 to continually improve cancer care for the people they serve;
• Rapidly transfers new research into improvements and innovations in clinical practice and cancer service delivery.

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.

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

With the exception of personal health information collected for Ontario’s Wait Time Information System (WTIS), all CCO 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 WTIS, CCO collects personal health information about wait times, such as who is waiting, for how long, and how this time compares with access targets for a given surgery or procedure.

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. Support cancer screening programs, such as:
   • The Ontario Breast Screening Program;
   • The ColonCancerCheck Program.
3. Provide information technology (IT) solutions, such as computer applications or network services, to health care providers involved in cancer system programs and projects managed by CCO.
4. Support cancer research.
5. Manage the Wait Time Information System.

CCO reports its findings in many publications and posts considerable information on cancer services and trends in Ontario on its web site.

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 Policy.

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.

With respect to the ColonCancerCheck Program, individuals may request access to their records by contacting the ColonCancerCheck Privacy Specialist at:

CCC Privacy Specialist
Cancer Care Ontario
620 University Avenue
Toronto, ON M5G 2L7
Phone: 416-971-9800 ext. 3200
Email: privacyoffice@cancercare.on.ca

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, 2008. 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 1-800-387-0073TDD/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: 416-971-9800 ext. 3200
Fax: 416.-971-6888
Email: privacyoffice@cancercare.on.ca