Information Practices Frequently Asked Questions
What is the Ontario Institute for Cancer Research?
The Ontario Institute for Cancer Research (OICR) is an innovative research institute with a focus on the prevention, early detection, diagnosis and treatment of cancer. It is located at the MaRS Centre in downtown Toronto, and collaborates with research partners in Ontario, across Canada, and around the world.
OICR is an independent, not-for-profit corporation, funded by the Government of Ontario through the Ministry of Economic Development and Innovation. OICR’s mandate is:
- to create a cancer research centre of excellence with a focus on the prevention, early detection, diagnosis, and treatment of cancer;
- to create an information network which will provide a single window to data resources for cancer health care professionals, researchers, patients and families in the public;
- to facilitate recognition of the province of Ontario as a major global address for cancer research by initiating, funding, promoting and stimulating cancer research and innovation in Ontario; and
- to build innovative programs that will lead to the effective translation of research findings into health care interventions, products and services.
OICR brings together multi-disciplinary, multi-institutional, collaborative teams, which allow complex research questions to be pursued and which are able to translate research findings into programs, technologies and therapies.
OICR has a number of research programs and technology platforms including the High Impact Clinical Trials Program, the Ontario Health Study, the Informatics and Bio-computing Platform, the International Cancer Genomics Consortium, and the Ontario Tumour Bank. Many of OICR’s research activities involve humans and this research is governed by the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS).
OICR also supports the Ontario Cancer Research Ethics Board (OCREB) as an arm’s length program. OCREB is an expert provincial, cancer-specific research ethics board providing centralized scientific and ethical review, and oversight of multi-centre cancer clinical trials.
What is the source of OICR’s research data?
OICR collects data, including personal health information (PHI), from different sources depending on the research area. OICR collects research data, for example, from facilities such as hospitals, clinics, independent health facilities and laboratories, which are classified under the Personal Health Information Protection Act, 2004 (PHIPA) as "health information custodians.”
What types of data does OICR collect?
All data are collected for the purpose of cancer research and are related to cancer, or are collected as part of larger health studies that include cancer-related research. For example, 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. OICR collects data, which may include PHI, specifically for its programs. All data that are in OICR’s custody are handled and stored securely, and confidentiality is protected; any data which are considered to be PHI as defined by Ontario’s Personal Health Information Protection Act, 2004 (PHIPA) are safeguarded accordingly.
How does OICR use the data which it collects?
OICR uses the information it collects:
- for research in the prevention, early detection, diagnosis, treatment and control of cancer;
- to build innovative programs that will lead to the effective translation of research findings into health care interventions, products and services; and
- to study the origins and the progress of cancer.
It also uses the data to provide relevant information to other researchers who use the data to conduct research which will facilitate and improve the provision of health care for cancer patients.
OICR reports its findings in research publications and posts information on cancer research in Ontario on its website (http://www.oicr.on.ca).
To whom does OICR disclose its data?
OICR releases data to researchers who apply to access information that is in the custody of one of the OICR programs, if the research plan meets OICR’s scientific standards and is consistent with OICR’s mission and objectives, and if the researcher has received approval for his/her research from a research ethics board. OICR does not release data that contains PHI with identifiers unless it is required or permitted to do so under PHIPA (for example, to health planning and management entities prescribed by Government). Any PHI that is disclosed must comply with OICR’s Data Use and Disclosure Policy.
How can I get access to my information?
OICR does not maintain health records and data about an individual may not be identifiable in OICR data holdings. The data held by OICR are only accurate as of the date of collection and only insofar as the institution supplying the data is aware. Therefore, persons requesting access to their data/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 (for example, the treating physician or other health care provider or hospital where the information was collected).
To whom can I speak if I have questions or concerns about OICR’s information practices and privacy program?
Questions related to OICR’s information practices or privacy program should be directed to:
Attn: Privacy Officer
Ontario Institute for Cancer Research
MaRS Centre, South Tower
661 University Avenue, Suite 510
Canada M5G 0A3
Email: privacyoicr [dot] on [dot] ca
To whom can I speak if I have further questions about OICR’s information practices and privacy program or if I am not satisfied as a result of my discussion with OICR’s Privacy Officer?
Contact the Ontario Information and Privacy Commissioner at:
Office of the Information and Privacy Commissioner/Ontario
2 Bloor Street East, Suite 1400
Canada M4W 1A8
Telephone: 416-326-3333 or 1-800-387-0073 TDD/TTY: 416-325-7539