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Saturday, 06 December 2014 12:41

Cancer Screening Programs and Personal Health Information: Questions and Answers for Ontarians

Cancer Care Ontario (CCO) is an agency of the Ministry of Health and Long-Term Care that provides cancer screening services to the people of Ontario. We are authorized by the government to collect personal health information (PHI) from organizations and professionals who are directly involved in the care and treatment of Ontarians, and we use this information to make healthcare services better. You can be assured that your information is kept secure, private and confidential at all times.

What are Ontario’s cancer screening programs?

Ontario’s screening programs offer people with no cancer symptoms in certain age groups the chance to get regularly screened for three types of cancer: breast, cervical and colorectal. Letters are sent to people to invite them to get screened, tell them about their test results, let them know if they need to get more tests done, and remind them when it is time to be screened again.

Why is it important for me to participate in cancer screening?

Cancer screening saves lives. Thousands of Ontarians are alive and healthy today because they got screened and were able to either prevent cancer or find it early when it’s easier to treat and beat.

How is Cancer Care Ontario authorized to use my personal health information?

Cancer Care Ontario (CCO) is authorized to collect personal health information (PHI) without consent under Ontario’s Personal Health Information Protection Act, 2004 (PHIPA) . Under the Act, CCO has a “prescribed registry” status. This means that CCO 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 comes with certain obligations under PHIPA. For example, CCO’s information and privacy practices must be reviewed by the Information and Privacy Commissioner / Ontario (OIPC) every three years to maintain this special designation.

Where does Cancer Care Ontario get my personal health information?

Cancer Care Ontario (CCO) 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.”

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

What types of information do Cancer Care Ontario’s cancer screening programs collect?

For its cancer screening programs, Cancer Care Ontario collects the following types of personal health information:

  • Your screening services (e.g., fecal occult blood test or FOBT, colonoscopy, mammograms, Pap tests) 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

How does CCO use my personal health information?

Cancer Care Ontario compiles 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 healthcare providers
  • Tell participants about their screening results
  • Recall participants for future screenings
  • Ensure 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

How does being contacted by Cancer Care Ontario benefit me?

Cancer Care Ontario (CCO) will remind you to discuss cancer screening with your healthcare provider and increase your awareness about cancer and cancer screening. CCO will also help you to become an active participant in your own health care and empower you to make important decisions about cancer screening.

Will Cancer Care Ontario use my information to contact me?

Yes. If you are eligible to be screened for breast, cervical or colorectal cancer, Cancer Care Ontario (CCO) may send you a letter inviting you to discuss cancer screening with your healthcare provider.

CCO will tell you your test results and remind you to repeat tests, as required.

You may choose at any time not to be contacted by CCO.

How do the cancer screening programs contact me?

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

What letters will I receive from the cancer screening programs?

  • Invitations and reminders to talk to your healthcare provider (e.g., 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

What do I do if I do not want to be contacted by Cancer Care Ontario about cancer screening programs?

  • 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 Program: Participant Information Form .
  2. Complete the appropriate sections
  3. Mail or fax the completed form to Cancer Care Ontario. 
    Detailed instructions and contact information are provided on the form—for assistance, please 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.

What will change after I ask to stop being contacted by Cancer Care Ontario about cancer screening?

You will continue to have access to the same healthcare services, including cancer screening services.

However, CCO will no longer invite or remind you to talk to your family doctor when it is time to be screened for cancer, we will not send your cancer screening test results in the mail, and we will not tell you when to seek necessary treatment if your screening results aren’t 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.

What if I change my mind about not receiving letters from Cancer Care Ontario?

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 5:00 p.m. Have your health card (OHIP card) ready to confirm your identity. 

If I ask not to receive letters, what will happen to my personal health information?

Cancer Care Ontario (CCO) 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 and the Freedom of Information and Protection of Privacy Act . CCO also uses your screening information for planning purposes, such as to determine how cancer screening services can be improved for Ontarians. To ensure appropriate protection of your personal health information, CCO’s privacy practices are reviewed and approved by the Information and Privacy Commissioner of Ontario.

Who does Cancer Care Ontario share my personal health information with?

Cancer Care Ontario (CCO) shares your personal health information with you when it gives you your screening results. CCO may also share your personal health information with: 

  • Your healthcare provider 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 healthcare provider and receive an abnormal test result—note that your results will only be shared with this provider with your permission
  • Cancer planning departments within CCO for the planning and management of the health system
  • Researchers for approved cancer research; however, researchers must meet specific privacy requirements, such as receiving approval from a Research Ethics Board to conduct the research, receiving approval from the CCO Data Access Committee to receive the information, and entering into an agreement with CCO, before CCO shares your personal health information with them

How does Cancer Care Ontario protect my personal health information?

Cancer Care Ontario (CCO) has administrative, technical and physical safeguards in place to protect your personal health information.

  • Administrative Safeguards: CCO describes its privacy practices in its 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 CCO’s privacy practices.
  • Technical Safeguards: Access to the Ontario Cancer Screening Registry is controlled by usernames and passwords, protected by CCO’s network security controls and monitored by the CCO Systems Security Specialist.
  • Physical Safeguards: Access to the CCO office and the data centre, where the servers that support the Ontario Cancer Screening Registry are housed, is controlled by access cards at doors and elevators, and monitored with video surveillance.

How long does Cancer Care Ontario keep my personal health information?

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 rates and to remind Ontarians about screening.

Can I access my screening results or other information that Cancer Care Ontario retains about me?

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 doctor or other health care organization). This is in line with and supported by the Personal Health Information Protection Act, 2004 (PHIPA) .

How can I update my personal information, such as name, address or telephone number?

  1. Download the  Cancer Screening Program: Participant Information Form .
  2. Complete the “Request to Change Personal Information” section.
  3. Mail or fax the completed form to the program. 
    Detailed instructions and contact information are provided on the form—if you need assistance, please call 1-866-662-9233. To protect your privacy, please do not email the form.

Remember to also update your contact information with ServiceOntario and your family doctor’s office.

More Privacy and Screening Info

  • For more information about how Cancer Care Ontario protects your privacy:
    • Visit online: Privacy page 
    • Email:  This email address is being protected from spambots. You need JavaScript enabled to view it.
    • Call: 416-217-1816
  • For more information about our screening programs:
    • Visit online: www.ontario.ca/screenforlife
    • Email:  This email address is being protected from spambots. You need JavaScript enabled to view it.
    • Call toll-free: 1-866-662-9233
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