Privacy - Frequently Asked Questions

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.

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.

The ICES Data Repository is based primarily on records generated from the administration of Ontario’s publicly funded health system, from 1986 to present. It also includes data from registries, surveys and research, and some 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.

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 publicly funded health system, you can gain a good idea of what information ICES has about you.

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.

ICES does not contact individuals. This is forbidden both by our internal policies and procedures and the contracts that govern our use of the information that makes up the ICES Data Repository.

ICES deploys a variety of measures to protect the information entrusted to it. Physical security measures, technological safeguards like 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.

ICES shares information in two situations only: (1) with researchers who have obtained approval from a research ethics board and (2) with other organizations like ICES 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 organizations like ICES, and are specifically allowed by Ontario’s Personal Health Information Protection Act.

To complain about how ICES protects privacy, you may contact the Office ot the Information and Privacy Commissioner of Ontario at:

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

Read our privacy policy. Please call, email or write to us if you have any questions or concerns:

Chief Privacy 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