Light breakfast served for in-person attendees at the Delta Ottawa City Centre hotel.
Emcee Claire Bertran, a member of HDRN Canada’s Public Advisory Council, will open the forum and welcome attendees online and in-person.
Elaine Kicknosway (Apatchitwane), Traditional Helper from Peter Ballantyne Cree Nation, will offer an Indigenous protocol and welcome to start the day in a good way.
Emcee Claire Betran interviews graphic recorder Laura Hanek about her powerful, unforgettable – and fun – process for capturing the essence of our forum. Laura will be documenting our day through live illustrations, which will be shared live on screen and digitally after the event.
After screening Falling Through the Cracks: Greg’s Story nearly 800 times, one thing has become clear to Teri Price: her brother Greg’s experience is not unique—it is a map of the systemic gaps in our health care system. From coast to coast, these 800 dialogues have revealed a universal truth: the very real human cost of disconnected health data and fragmented information systems in Canada. Teri explores how storytelling can ignite a movement for meaningful system change, diving into lessons learned from a diverse tapestry of voices who have navigated these same “cracks” and discussing why technical solutions alone aren’t enough. Successful transformation requires collaboration and a willingness to learn from lived experience. Whether you are a researcher, policymaker, clinician or patient, you have a vital role to play. Terri will discuss how we can collectively listen, learn and co-design a future where health data create a bridge, not a barrier, ensuring no one else falls through the cracks.
Every interaction with the health system — such as filling a prescription, visiting the Emergency Department or filing an insurance claim — generates data. When those data are accurate, connected and reflective of the full diversity of people in Canada, they become a powerful tool to improve care, strengthen the health system and advance health equity. This session follows the journey of health data — from collection at the point of care to harmonization, linkage and transformation into insights that guide real-world decisions. Juliana Wu will explore why responsible data collection, use and sharing are critical, and how strong stewardship, common standards and clear ethical frameworks help build trust and maximize public value. Through collaboration, meaningful partnerships and the thoughtful use of emerging technologies, Canada has an opportunity to unlock the full potential of its health data. The result: more responsive, evidence-informed decision-making and better health outcomes for people and communities across the country.
A buffet lunch will be served to in-person attendees at the Delta Ottawa City Centre. Online attendees are invited to join lunchtime networking breakout rooms.
Concurrent Session 1
Learn about Statistics Canada’s approach to data governance in the digital age and its evolution from traditional “Privacy by Design” principles toward a broader and more integrated “Responsible Privacy Culture.” StatCan Chief Privacy Officer Dr. Pierre Desrochers and Shelley Jeglic discuss how trust is strengthened through responsible privacy practices at the nation’s statistical agency. They outline the trust‑centred methodology used for de‑identification, and explain the application of the principles of necessity and proportionality across programs. They also highlight how the “Five Safes” framework underpins access to Statistics Canada’s microdata, including Public Use Microdata Files and Real Time Remote Access as well as in‑person and remote access to confidential microdata.
Concurrent Session 2
Health data touch every part of our lives. They support medical research, inform clinical care, support health system management, strengthen public health and power decision-making at every level. These data come from many different sources: family doctors’ offices and hospitals; biobanks and clinical trials; wearable devices and health apps; and social care records. Together, they create a rich — but complex — picture of our health. The big question is: how can we use all this information safely, ethically and at scale, so it benefits everyone? Dr. Jean-Francois Éthier will explore practical ways to do just that. He’ll look at how clearly defining and aligning data — a process called data harmonization — helps ensure data can be compared and used effectively for research. He’ll also discuss distributed analysis, a method that allows data to be analyzed where they are securely stored, eliminating the need to move sensitive information while enabling insights that might otherwise be difficult or even impossible to achieve. By strengthening how we understand, connect and protect health data, we can improve care, advance research and deliver better health outcomes for all of us.
This panel discussion will explore Indigenous data and the partnerships that bring together Indigenous organizations, communities and settler institutions, grounded in broader themes of ethics, respect and trust. Panelists will highlight real-world examples of collaboration in data initiatives and data sharing, with a focus on nurturing respectful relationships, advancing Indigenous data sovereignty, and practicing responsible data stewardship. At the heart of this conversation is the understanding that strong data partnerships are built on trust, reciprocity and community leadership. These elements are essential to ensuring that data are used in ways that are equitable, culturally grounded and sustainable over time. Aligned with the broader theme of Health Data for All of Us and our shared health data journey, this session will pay particular attention to the data-sharing stage — and to the relationships that make meaningful, ethical data sharing possible.
Dr. Adeera Levin will share insights from her work as a nephrologist and national leader with CanSOLVE-CKD, illustrating how patient-oriented research and health data have been used to improve the care of patients with kidney disease.
Christina Weise will present examples from her work as the Executive Director with the Saskatchewan Centre for Patient-Oriented Research (SCPOR), demonstrating how provincial data and patient engagement have informed practical improvements in health programs and services.
Conrad Pow will draw on his experiences as the Digital Health Lead at Diabetes Action Canada and a parent of a child living with diabetes to explore how lived experience and health data together shape meaningful research that leads to real-world improvements to outcomes for patients with diabetes.