Revitalizing At-Risk Data: The Canadian Public Data Rescue Initiative

Date: October 15th 12:00pm-1:00pm

Presenters: Kristi Thompson (Research Data Management Librarian, Western University) and Alexandra Cooper (Data Services Coordinator, Queen’s University)

In early 2025 data and documents began to disappear from U.S. government web sites in response to a series of executive orders. This led to a scramble as various individuals and groups mobilized to save as much disappearing data as they could. These events served as a wake-up call and led to the founding of the Canadian Public Data Rescue Initiative (CPDRI). 

Initially formed, in part, to support rescue efforts in the U.S., the CPDRI also set out to build infrastructure to support public data in Canada. Drawing on projects including the Canadian Government Information Digital Preservation Network and the OCUL Ontario Data Rescue Group, the CPDRI is working to establish a sustainable strategy for preservation of vital Canadian public datasets. 

Health Privacy 101

Date: October 22nd 12:00pm-1:00pm

Contributors: Sahar Naseer (Privacy Specialist, The Hospital for Sick Children), Roohie Sharma (Legal Privacy Counsel, The Hospital for Sick Children), Melissa Lanuza (Privacy and FOI, The Hospital for Sick Children)

This presentation provides a foundational overview of health privacy principles and legislation relevant to Ontario hospitals. It introduces the ten privacy principles that underpin Canadian privacy laws, with a focus on the Personal Health Information Protection Act (PHIPA), the Personal Information Protection and Electronic Documents Act (PIPEDA), and the Freedom of Information and Protection of Privacy Act (FIPPA). The session covers the rights and responsibilities associated with personal health information (PHI) and personal information (PI), the process for handling freedom of information requests, and the importance of cybersecurity awareness.

Why Cybersecurity Matters in Research: Protecting Data, Patients, and Discovery

Date: October 29th 12:00pm-1:00pm
 
Presenters: Irfaan Cader (Senior Information Risk and Security Professional, The Hospital for Sick Children)
 
As research continues to generate and depend on vast volumes of data, the boundaries between healthcare, computation, and innovation continue to blur. High-performance computing, cloud environments, and federated data platforms are transforming how research is conducted, yet the frameworks that govern cybersecurity, privacy, and data management often struggle to keep pace with this digital acceleration.
 
In this session, Irfaan, Senior Information Risk Analyst at the SickKids Research Institute, introduces how cybersecurity and information risk management principles can strengthen trust, integrity, and collaboration across the research lifecycle. Drawing on experience at the intersection of clinical research, IT compliance, and information risk, he will outline how standards such as those from NIST and policy instruments like Canada’s Tri-Agency Research Data Management Policy influence how institutions think about protecting data, enabling collaboration, and supporting responsible research.
 
Attendees will learn that effective security in research is not only about firewalls and encryption, but also about building a culture of responsible innovation that safeguards data, protects patients, and sustains discovery across Ontario’s research ecosystem.