Why is ICES able to collect my information? ICES has a special designation under Ontario’s Personal Health Information Protection Act. It is a designation granted by the Information and Privacy Commissioner of Ontario (IPC), based on a review of an organization’s privacy practices. ICES is one of a handful of organizations with this designation, which is subject to ongoing IPC oversight and renewal every three years.
How does ICES use my information? ICES leads cutting-edge studies that evaluate health care delivery and outcomes. The foundation of this important work is the ICES Data Repository, which contains coded information from Ontario’s health system and other sources. Any direct personal identifiers, including your name and health card number, are removed and replaced with a confidential code, so no ICES researchers know who you are.
Where does ICES get information from? The ICES Data Repository is based primarily on administrative records generated by Ontario’s publicly funded health system from 1986 to present. The repository also includes data from registries, surveys and research, and from government ministries and public agencies outside the health sector. These data are collected mostly by Ontario’s Ministry of Health and Long-Term Care, health care providers, and other ministries, agencies and research organizations.
How do I find out what information ICES has about me? If you have been a resident of Ontario and eligible for universal health coverage since 1986 some of your information is certain to be contained in the ICES Data Repository. By visiting the Data Dictionary on our web site and knowing your own history of contact with the province's publicly funded health system, you can gain a good idea of what information ICES has about you.
Can I be identified? The vast majority of information that comes to ICES arrives in identifiable form. It is received by a small, select group of individuals who are charged with removing any direct personal identifiers, such as your name and health card number, and replacing these with a confidential code that allows linking for use in ICES research projects. No one else at ICES will ever see your name. We reinforce this by requiring everyone at ICES to sign a confidentiality agreement promising not to make any attempt to re-identify any person. If they do, their privileges will be revoked and their relationship with ICES will end.
Will I ever be contacted? ICES does not contact individuals. This is forbidden by our internal policies and procedures and by the contracts that govern our use of the information that makes up the ICES Data Repository.
How does ICES protect my privacy? ICES deploys a variety of measures to protect the information entrusted to it. Physical security measures, technological safeguards such as encryption, and a robust framework of policies and procedures work together to protect information. Most importantly, we remove your name and other direct personal identifiers from your information as soon as we collect it.
Does ICES share my information with others? ICES shares information in two situations only: (1) with researchers who have obtained approval from a research ethics board, and (2) with other organizations that have a mandate to enable health care monitoring and evaluation. These types of sharing enable the important work done by independent researchers and other research organizations, and are specifically allowed by Ontario’s Personal Health Information Protection Act.
Who can I complain to? To complain about how ICES protects privacy, you may contact: Office of the Information and Privacy Commissioner of Ontario 2 Bloor Street East, Suite 1400, Toronto, ON, M4W 1A8 T:416-326-3333 / 1-800-387-0073 F:416-325-9195 info@ipc.on.ca
How do I find out more? Please call, email or write us if you have any questions or concerns: Chief Privacy and Compliance Officer Institute for Clinical Evaluative Sciences G-106, 2075 Bayview Avenue Toronto, ON, M4N 3M5 T: 416-480-4055 F: 416-480-6048 privacy@ices.on.ca