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Frequently Asked Questions

1. What is the Newfoundland and Labrador Cancer Care Registry (NLCCR)? 
 
The NLCCR is operated by Eastern Health’s Provincial Cancer Care Program, which serves the entire province of Newfoundland and Labrador. On May 5, 2017, the NLCCR received authorized registry status under the Personal Health Information Act (PHIA). The registry was created to collect, use, and share data related to cancer screening and the delivery of cancer care in the province.
 
The NLCCR consists of five separate programs, including colon, breast and cervical screening programs and the provincial tumour and chemotherapy tracking programs.
 
 
2. What is the purpose of the NLCCR?
 
The NLCCR aims to:
  • improve patient care;
  • provide information to support decision making and identify priorities in health care;
  • collect information to better understand cancer risks and the effects of cancer;
  • measure change over time;
  • improve cancer care delivery and research; and
  • improve delivery of screening programs.

3. What types of information does the NLCCR collect?
 
Each program that is part of the NLCCR collects different types of data. For example:
 
Screening programs may collect information about an individual’s:
  • screening services and results information, including home stool tests, mammograms, Pap tests;
  • health information, including colorectal, cervical or breast cancer histories; and
  • contact information, including names and addresses.
Chemotherapy and disease tracking programs may collect information such as an individual’s:
  • chemotherapy treatment information, including type, dose and cost of drug(s) received; and
  • disease information, including type of cancer, stage at diagnosis, etc.
 
4. How is my information used?
 
Your health information is used for a number of important reasons. Some examples are to:
  • issue population-based screening programs, invite or to recall healthy people for routine screening;
  • send reminders to patients and/or their health care provider about follow-up visits; 
  • track important health information such as patient wait times to receive treatment; and
  • support planning for health-care budgets and programming. 

5. How is my privacy protected, and how is my information shared?
 
The information contained in the NLCCR is secure, private and confidential, and can only be accessed by people who are allowed to use the health information systems. Your health information is only shared with those within your circle of care or for quality improvement in cancer care.  
 
Staff of the NLCCR take an Oath of Confidentiality, receive training on the Personal Health Information Act, and must follow policies and procedures related to privacy.
 
 
6. Why is it necessary to collect health information?
 
By collecting health information, the Cancer Care Program can monitor results, wait times and outcomes for patients. For example, this information helps to make decisions such as when and how often to screen.
 

7. Who gives the NLCCR permission to collect, use and share my health information?
 
Under the Personal Health Information Act (PHIA), the NLCCR has an “authorized registry” status. This means that the registry can collect, use and share your health information to support the delivery of health care with respect to colorectal, cervical and breast cancer. It can also monitor chemotherapy delivery and track cancer rates. This information is needed to support and provide the best health care possible.
 
Registry status comes with certain obligations under PHIA. For example, the NLCCR’s information and privacy practices must be reviewed by the Office of the Information and Privacy Commissioner to maintain its special designation.
 
If you have any questions regarding the NLCCR’s authority to collect, use or share information, please contact Eastern Health’s Access and Privacy Office at (709) 777-8025
 
 
8. Do you need my consent to collect, use and share health information?
 
No, consent is not required in order for the NLCCR to collect, use and share health information. The without-consent aspect is intended to ensure that the data maintained in the registry is complete and accurate in order to support the delivery of quality health-care services in the province.
 
Special authorization of the NLCCR under the Personal Health Information Act (PHIA), supports the processes of collecting, using and sharing information. Registries similar in nature have been in operation in other jurisdictions in Canada for several years. 
 
 
9. Why can’t I opt out of having my information included in the NLCCR?
 
The NLCCR is authorized to collect personal health information without consent under Newfoundland and Labrador’s Personal Health Information Act, 2008 (PHIA). Data in the NLCCR must be complete and accurate in order to support the delivery of quality cancer care services in the province. If people opted out of the NLCCR, the data would be incomplete.
 
Screening Programs:
 
10. How did the screening program get my name and address?  
 
Research shows that people of certain ages will benefit the most from cancer screening. As such, the names and addresses of patients who meet cancer screening guidelines for breast, colon and cervical screening are provided to the NLCCR from provincial databases. These individuals are contacted with an invitation to take part in screening.
 
 
11. Can I opt out of being contacted by screening programs?
 
Yes, taking part in screening is entirely voluntary. You are able to opt out of receiving communications from the screening program by doing any of the following:
  • On the participant form that patients receive in the mail from the screening program, check off the “opt out” option and return it to the Screening Program.
OR
  • Call any of the screening program(s) directly at:
         Colon Screening:1-855-614-0144
         Breast Screening:1-800-414-3443
         Cervical Screening:1-866-643 8719
 
By opting out of the screening programs, it means that you do not want to participate in receiving communications related to screening and you do not want to be contacted again. However, should you change your mind at any time, you can request to receive communications from the Screening Program by calling any of the numbers above.
 

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Updated Oct 25, 2017