Overview: Secure storage & accelerated research
Statement of Purpose
What is the Ontario Tumour Bank?
The Ontario Tumour Bank (OTB) is a provincial biorepository that collects tissue, blood and Personal Health Information (PHI) from consenting volunteer participants and was established in response to a growing need for a provincial tissue and data bank to support cancer research. The outcomes of the research studies are expected to contribute to the provision of healthcare for cancer patients by providing information that may lead to an increased understanding of the disease, and the development of new diagnostic tools and therapies.
OTB is one of several programs of the Ontario Institute for Cancer Research (OICR), a not-for-profit corporation that is funded by the Government of Ontario. Under section 39(1)(c) of the Personal Health Information Protection Act, 2004 (PHIPA), OICR in respect of OTB is prescribed as a registry of PHI. In order to fulfill this role, OICR has implemented policies, procedures and practices to protect the privacy of individuals whose PHI it receives and to maintain the confidentiality of that information.
PHI, together with tissue and blood (samples), are collected from participants who have provided informed consent at OTB-partner healthcare sites in Ontario: London Health Sciences Centre, St. Joseph’s Healthcare Hamilton, The Ottawa Hospital and Unity Health Toronto. OTB’s resource of high-quality samples and data is made available to cancer researchers worldwide. Researchers may request samples and data from OTB by submitting an application form with proof of local research ethics review for their study. A Material Transfer Agreement (MTA) must also be signed, which includes a requirement that the researcher will maintain confidentiality of the data and will not attempt to re-identify any participants. OTB reviews and approves the application before any samples and data are provided to researchers. OTB is a foundational resource for researchers who are developing new diagnostic tools and drug therapies, for the enhancement of patient care.
Where does OTB get PHI?
For patients who consent to participate, OTB collects PHI from participants, as well as their health records, at partner healthcare sites. Under PHIPA, these partner healthcare sites are classified as ‘health information custodians’.
What type of PHI does OTB collect?
PHI collected from the health record of participants includes demographic information (e.g., age, sex), details of the cancer diagnosis (e.g., type of cancer, grade, stage), treatment details, participant and family history of cancer, risk factors, and outcome information concerning the progression of the disease or disease-free status.
OTB also collects direct identifiers (e.g., name, date of birth, medical record number). These identifiers are necessary (as opposed to de-identified or aggregate data) for partner healthcare sites to collect longitudinal and comprehensive data from participant healthcare records and allows for linkages to other datasets, such as at Ontario Health/Cancer Care Ontario (CCO). Ontario Health/CCO is a provincial agency that is responsible for continually improving cancer services and is the government’s cancer advisor. The link to PHI is securely stored, and data access is controlled in the OTB Central Database at OICR.
How does OTB use PHI?
OTB does not perform research and therefore does not use, disclose or retain PHI or de-identified data for its own research purposes. The use, disclosure and retention of data that is collected by OTB is for the stated purpose only, which is to maintain a high quality registry of samples and accompanying data to support cancer research.
Only de-identified data and samples are disclosed to approved academic and industry-based researchers. PHI that is collected at partner healthcare sites, including information provided by other data holdings, such as Ontario Health/CCO, is de-identified before it is disclosed to researchers for research purposes. This means that information that could reasonably identify an individual is removed from the data and that researchers do not receive this information. The outcomes of these research studies are expected to advance cancer research.
To whom does OTB disclose PHI?
OTB does not permit PHI to be disclosed to researchers under any circumstances. OTB is permitted to disclose PHI for non-research purposes in specified circumstances as permitted by PHIPA and its regulations. For example, OTB may disclose PHI to Ontario Health/CCO for the purpose of linking PHI collected at partner healthcare sites to additional information that is in the custody and control of Ontario Health/CCO (e.g., data within the Ontario Cancer Registry, the provincial cancer registry). This disclosure is permitted under s. 49 of PHIPA. OTB will disclose PHI only if de-identified or aggregate data will not serve the purpose.
How can I get access to my information?
Persons requesting access to their information will be directed to the partner healthcare site (i.e., the health information custodian) where it was collected.
Whom can I speak to if I have questions about OTB’s information practices and privacy program?
Questions, concerns or complaints related to OTB’s information practices or privacy program should be submitted in writing and addressed to the OICR Privacy Officer, as set out below. All inquiries will be dealt with in a timely fashion.
Ontario Institute for Cancer Research
Attn: Privacy Officer
MaRS Centre
661 University Avenue, Suite 510
Toronto, Ontario, Canada
M5G 0A3
Email: tumourbank@oicr.on.ca
Any complaints regarding OTB’s compliance with PHIPA and its regulations may be directed to the Information and Privacy Commissioner of Ontario:
Information and Privacy Commissioner/Ontario
2 Bloor Street East, Suite 1400
Toronto, Ontario, Canada
M4W 1A8
Web: www.ipc.on.ca
Telephone: 416-326-3333 or 1-800-387-0073