Personal Health Information Frequently Asked Questions

Cancer Care Ontario is authorized to collect personal health information (PHI) without consent under Ontario’s Personal Health Information Protection Act, 2004 (PHIPA) . Under the Act, we have a “prescribed registry” status. This means that we can collect, use and disclose PHI for the purposes of facilitating or improving the provision of health care with respect to colorectal, cervical and breast cancer. 

Prescribed registry status requires us to undergo review of our information and privacy practices by the Information and Privacy Commissioner of Ontario every 3 years to maintain this special designation.

Cancer Care Ontario collects information from different sources, including hospitals, clinics, independent health facilities and laboratories, known under the Personal Health Information Protection Act, 2004 (PHIPA) as “health information custodians.” 

We also get data from the Ontario Ministry of Health and Long-Term Care, and other organizations who have a role in the Ontario healthcare system such as the Canadian Institute for Health Information. 

We collect 3 types of personal health information for our cancer screening programs: 

• Your screening tests (e.g., fecal immunochemical test or FIT, colonoscopy, mammogram, Pap test) and results information
• Your health information, such as colorectal cancer history, cervical cancer history or breast cancer history
• Your contact information, such as your name and address

Cancer Care Ontario uses personal health information to: 

• identify people who should be screened for breast, cervical or colorectal cancer 
• invite people to be screened for these cancers by sending them invitation letters encouraging them to discuss cancer screening with their family doctors or nurse practitioners 
• tell participants about their screening results
• recall participants for future screenings
• make sure that our screening programs (ColonCancerCheck, Ontario Breast Screening Program, Ontario Cervical Screening Program) are meeting their objectives (e.g., a high percentage of eligible Ontarians are getting screened for colorectal, breast and cervical cancers)
• assist with research 

Cancer Care Ontario reminds you to discuss cancer screening with your family doctor or nurse practitioner and increases your awareness about cancer and cancer screening. We also help you become an active participant in your own healthcare and empower you to make important decisions about cancer screening.

Yes. If you are eligible to be screened for breast, cervical or colorectal cancer, Cancer Care Ontario may send you a letter inviting you to discuss cancer screening with your family doctor or nurse practitioner.  

We also tell you your test results and remind you to repeat tests, as required. 

You may choose at any time not to be contacted by us. What do I do if I do not want to be contacted by Cancer Care Ontario about cancer screening programs?

The cancer screening programs may contact you by mail. Most people in these programs receive 1 or 2 automatically generated letters every year. If we need to contact you right away (e.g., to confirm your mailing address or to confirm you received one of our letters) a program representative may call you.

• Invitations and reminders to talk to your family doctor or nurse practitioner about breast, cervical and/or colorectal cancer screening 
• Test results after you do a screening test 
• Other personalized letters to respond to questions you send us 

Learn more about the letters sent to the public.

At your request, we will stop sending you letters about breast, cervical and/or colorectal cancer screening. To make this request: 

1. Download the Cancer Screening Programs: Participant Information Form. 
2. Complete the appropriate sections. 
3. Fax the completed form to 1-866-682-9534 or mail it to the address on page 2 of the form. Detailed instructions and contact information are provided on the form – for assistance, call 1-866-662-9233. To protect your privacy, please do not email the form. 

It can take up to 30 days to process your request. Until then, you might get other letters about cancer screening. Once your request is processed, we will send you one last letter to let you know that you were removed from the mailing list. You may request not to receive a confirmation letter in Section 2 of the form. 

You will continue to have access to the same healthcare services, including cancer screening services. However, we will no longer:

• invite or remind you to talk to your family doctor when it is time to be screened for cancer
• send your cancer screening test results in the mail
• tell you when to seek necessary treatment if your screening results are not normal

You, along with your family doctor or nurse practitioner, will be responsible for staying up-to-date with your cancer screening appointments and test results. 

If you would like to start receiving letters from Cancer Care Ontario again, we are happy to add you back to our mailing list. Call the Cancer Screening Program Contact Centre toll-free at 1-866-662-9233 between Monday and Friday from 8:30 a.m. to 5 p.m. Have your health card (OHIP card) ready to confirm your identity.

Cancer Care Ontario has the authority to collect, use and disclose your personal health information (e.g., test results) under Ontario’s privacy legislation – the Personal Health Information Protection Act, 2004 (PHIPA) and the Freedom of Information and Protection of Privacy Act (FIPPA). We also use your screening information for planning purposes, such as to determine how cancer screening services can be improved for Ontarians. To make sure your personal health information is protected appropriately, our privacy practices are reviewed and approved every 3 years by the Information and Privacy Commissioner of Ontario.

Cancer Care Ontario shares your personal health information with you by sending you your screening results. We may also share your personal health information with: 

• your family doctor or nurse practitioner so he or she is aware of your screening information and results 
• a healthcare provider who will care for you if you do not already have a family doctor and receive an abnormal test result – note that your results will only be shared with this provider with your permission 
• cancer planning departments within Cancer Care Ontario for the planning and management of the health system 
• researchers for approved cancer research; however, researchers must meet specific privacy requirements before Cancer Care Ontario shares your personal health information with them, such as:
  • receiving approval from a Research Ethics Board to conduct the research
  • receiving approval from the Cancer Care Ontario Data Access Committee to receive the information
  • entering into an agreement with Cancer Care Ontario

Cancer Care Ontario has administrative, technical and physical safeguards in place to protect your personal health information:

• Administrative Safeguards – We describe our privacy practices in our Privacy Policy, which staff must read, and privacy training sessions, which all staff must attend. Staff must also sign agreements verifying they understand and will adhere to Cancer Care Ontario’s privacy practices. 
• Technical Safeguards – Access to the Ontario Cancer Screening Registry is protected by authentication and authorization mechanisms (usernames and passwords), our network security controls and monitored by the Cancer Care Ontario Logging Monitoring and Auditing System. 
• Physical Safeguards – Access to the data centre, where the servers that support the Ontario Cancer Screening Registry are housed, is controlled by entry point access cards at doors and elevators, is safeguarded by security guards (24 hours a day, 7 days a week), requires personnel security clearance/background checks and is monitored with video surveillance.

Cancer Care Ontario retains personal health information in the Ontario Cancer Screening Registry indefinitely to allow for effective evaluation of the impact of cancer screening on cancer mortality (death) rates and to remind Ontarians about screening.

Generally, people requesting access to their personal health information will be directed to healthcare providers, who collected the information in the first place and who are directly involved in the care and treatment of patients (e.g., your family doctor or other healthcare organization). This is in line with and supported by the Personal Health Information Protection Act, 2004 (PHIPA).

1. Download the Cancer Screening Programs: Participant Information Form.
2. Fill out the “Request to Change Personal Information” section. 
3. After you have filled out the form, fax it to 1-866-682-9534 or mail it to the address on page 2 of the form. The form has instructions and tells you how to contact us – if you need help, call 1-866-662-9233. To protect your privacy, please do not email the form. 

Also remember to update your contact information with ServiceOntario and your family doctor or nurse practitioner. 

Screening Programs Information

For more information about our screening programs, see our Screening Programs page. You can also contact us by:

• View Screening Programs
• Send us an email
• Call us toll-free at 1-866-662-9233