Health Data for All of Us traces our health data journey
HDRN Canada’s public forum, Health Data for All of Us, returns for a fourth year to trace the journey of our personal data through the health care and health data ecosystems. The annual event, which takes place April 21 in Ottawa and online, is designed to engage members of the public, researchers and policymakers in meaningful dialogue about health data access and use in Canada.
“We’re honoured to host another impressive lineup of health researchers, advocates and leaders who will walk us through the key waypoints along our health data journey, from the point of collection all the way through access, use and dissemination in research findings and policy recommendations,” said Dr. Kim McGrail, Scientific Director and CEO of HDRN Canada. “By the end of the day, participants will have insight into why the use of health data matters, how our data are protected, and the implications for health equity, health outcomes and Indigenous data sovereignty.”
We’re honoured to host another impressive lineup of health researchers, advocates and leaders who will walk us through the key waypoints along our health data journey, from the point of collection all the way through access, use and dissemination in research findings and policy recommendations. ~ Dr. Kim McGrail
Keynote speaker Teri Price, co-founder of Greg’s Wings, will open the forum by sharing the tragic story of her brother, who died of a treatable cancer as a result of systemic gaps in health data sharing. She outlines the failed journey of Greg’s health data and the transformation needed to address fragmented information systems in Canada and prevent avoidable deaths. The next 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, Executive Director of Health Data Advancement at the Canadian Institute for Health Information (CIHI), 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 enhance evidence-informed decision-making to create better health outcomes for all.
Statistics Canada’s Chief Privacy Officer Dr. Pierre Desrochers, along with Shelly Jeglic, will discuss how trust is strengthened at the nation’s statistical agency in their session, exploring the shift from “privacy by design” responsible privacy practices, including the “Five Safes.” In his session, Dr. Jean-François Éthier explains his groundbreaking work on distributed analysis, a method that allows data to be analyzed where they are securely stored, eliminating the need to move sensitive information. A clinician-scientist and professor in the Université de Sherbrooke’s Departments of Medicine and Computer Science, Dr Éthier will describe how this method of connecting and protecting health data will improve care and advance research.
The afternoon panel discussion will highlight real-world examples of collaboration in data initiatives and data sharing among First Nations, Métis and Inuit, with a focus on nurturing respectful relationships and advancing Indigenous data sovereignty. Panelists Dr. Amanda Fowler-Woods, Dr. Jillian Waruk, Tom Robert and Nathalie Buisse will pay particular attention to the data-sharing stage of the health data journey—and to the relationships that make meaningful, ethical data sharing possible. Dr. Adeera Levin, Christina Weise, Kristy Jones and Conrad Pow will close out the day with a rapid-fire round titled Our Health Data in Action, drawing on their professional and practical experiences to demonstrate how data can be used to meaningfully improve health care systems.
Online and in-person tickets for Health Data for All of Us: Our Health Data Journey are available here. Check out the full agenda here.