Holland Bloorview Kids Rehabilitation Hospital is committed to protecting the privacy of all research participants while advancing important scientific discovery.
What is changing?
We are providing this notice to inform former and current research participants of updated and expanded guidance from the Information and Privacy Commissioner of Ontario (IPC) regarding the de-identification of structured data.
De-identification is the process of removing or transforming personal information so that individuals cannot be reasonably identified. Under current IPC guidance, data are considered de-identified when the risk of re-identification is very low, based on a formal risk assessment that considers available data, context, and technological advancements.
These updated guidelines reflect evolving best practices and advances in technology that can affect how data may be re-identified over time.
What does this mean for your information?
If you previously participated in a research study at Holland Bloorview:
- Your information may have been stored securely and used in a de-identified form for research purposes, as described in your consent form.
- De-identified data may have been shared with approved researchers or databases (such as Brain-CODE) without direct identifiers such as your name, address, or contact information.
- Researchers are not permitted to attempt to re-identify you, and safeguards are in place to minimize this risk.
The updated IPC guidance does not change the original purpose for which your information was collected or used. Rather, it strengthens how organizations like ours assess and manage privacy risks over time.
Are we asking for new consent?
No.
Under Ontario privacy law, organizations are not required to obtain consent to de-identify information, but we are committed to transparency and are informing you of this update.
This update reflects:
- A change in standards and methods used to assess whether data are de-identified, and
- Our ongoing efforts to ensure that your information continues to be handled responsibly and securely.
What safeguards are in place?
Holland Bloorview continues to:
- Apply rigorous de-identification methods, including removing or transforming identifying information
- Assess and monitor the risk of re-identification on an ongoing basis, including as technology evolves
- Limit access to data and require strict data use agreements that prohibit re-identification attempts
- Ensure that all research uses are subject to Research Ethics Board (REB) oversight where required
What if risks change?
If at any time a dataset is determined to have a meaningful risk of re-identification, it would no longer be treated as de-identified data and would be subject to additional protections, including potential research ethics review or consent requirements.
Questions or concerns
If you have questions about how your information is used or protected, please contact:
Privacy Office
Holland Bloorview Kids Rehabilitation Hospital
