How does Cancer Care Ontario support cancer research?
Cancer Care Ontario (CCO) is strongly committed to supporting cancer research and encourages the use of its data for this purpose. Our goal is to make timely and accurate data available to researchers throughout the health sector, while respecting our privacy obligations under the Personal Health Information Protection Act, 2004 (PHIPA).
What are CCO’s obligations under PHIPA?
All requests by researchers for access to CCO data must meet the minimum requirements set out in Section 44 of PHIPA. This means that the research protocol must be approved by a Research Ethics Board (REB) and supported by a confidentiality agreement entered into by the researchers.
What other factors does CCO consider?
In addition to ensuring that the minimum legal requirements are met, we also seek to ensure that the request is in line with our mandate and shows evidence of sufficient scientific merit (e.g. peer review).
What documentation must I submit to CCO to begin the application process?
Our Information Management Coordinator will work with you throughout the application process to ensure that all required information has been received prior to formal review.As per Section 44 of PHIPA, all research requests must include the following:
It is essential that the documentation you provide be accurate, complete, and up to date; upon approval of your request, you will be bound to their terms via their inclusion in a confidentiality agreement.
Who makes the final decision to approve a research request?
Cancer Care Ontario’s Data Access Committee – co-chaired by our Chief Information Officer and Chief Privacy Officer – is responsible for ensuring that the research request complies with PHIPA and with CCO’s privacy policies, and meets the standards discussed above. Where this is the case,the Committee will grant formal approval for release of the requested data to the researcher (subject to the receipt of a signed confidentiality agreement).
What are my obligations with respect to the data disclosed to me by CCO?
Your obligations are specified in the confidentiality agreement you must sign prior to release. Please read this agreement carefully as it is legally binding.
Can researchers contact patients with the data CCO has provided?
Under Section 44 of PHIPA, CCO is required to obtain a patient’s
consent to be contacted for the purpose of participating in research;
that is, CCO must obtain consent prior to contact by a researcher whose
study otherwise meets the requirements outlined in PHIPA and in CCO’s
privacy policies.
To ensure that vital cancer research initiatives
are not foreclosed, we have initiated a pilot contact process. Once
your research study has been reviewed and is pending approval by CCO,
CCO will:
- work with you to identify prospective participants;
- contact the prospective participants to introduce the research
study and to provide an opportunity for individuals to “opt-out” of
future contact; and
- notify the individuals’ clinicians of our intent to contact their
patients for the purpose of participating in the research study.
At the conclusion of this process and once formal approval is received,
CCO will provide you with the contact information of the individuals
who have not opted out of the study, along with written authorization
to contact these individuals. The terms of this engagement will be
specified in a confidentiality / non-disclosure agreement.
For more information, please contact CCO’s Information Management Coordinator (see contact information below).
Who can I contact for more information?
Please contact CCO’s Information Management Coordinator at:
Cancer Care Ontario
505 University Avenue
Toronto ON M5G 1X3
Attn: Information Management Coordinator
Tel: 416-971-9800 Ext. 3109
Fax: 416-971-6888
Email: datarequest@cancercare.on.ca
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