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Light breakfast served for in-person attendees at Le Westin Montreal.

Bill Pratt, Chair of HDRN Canada’s Public Advisory Council, opens the forum and welcomes attendees online and in-person at Le Westin Montreal.

Otsi’tsakèn:ra, a respected Elder of the Kanien’keha:ka community of Kahnawa:ke, on the south shore of Otsira:ke (Hochelaga/Montreal) will offer an Indigenous protocol to start the forum in a good way.


Health data systems lie not just in the technology and data they harness but in the trust and relationships they cultivate among people. In this presentation, Dr. Antoine Boivin and Farin Shore propose an alternative approach to data management that centres on nurturing trusting relationships between patients, caregivers, researchers, policymakers and marginalized communities. By emphasizing the integration of care principles, ethical data usage, and the inclusion of diverse voices, we outline a pathway towards caring health data systems to support health and equity goals.

Light refreshments for in-person attendees will be served at Le Westin Montreal.

In this interactive session, Harlan Pruden and Dr. Teddy Consolacion explore and explain Two-Spirit, followed by a discussion of the work of the Two-Spirit Dry Lab, Turtle Island’s first research group that focuses exclusively on Two-Spirit people, communities and experiences. The Two-Spirit Dry Lab works to promote wise practices in sex and gender research and to grow new knowledge(s) that can be applied to improve the lives, health and wellbeing of Two-Spirit and other Indigenous people. Harlan will further explore the Two-Spirit Dry Lab’s dual functions of capacity-building — to develop promising practices for Indigenous and Two-Spirit research; and discovery — to identify factors that promote the health of Two-Spirit people through our analyses and continuous learning and engagement with and for the Two-Spirit community.

A buffet lunch will be served to in-person attendees at Le Westin Montreal.

Concurrent Session 1

Health equity ensures that all individuals can reach their best level of health regardless of race, gender, religion, sexual orientation, age, socio-economic status or other socially determined circumstance. In this presentation, Dr. Laura Bee and Carrie-Anne Whyte explore the benefits and challenges of health research as it relates to advancing health equity, and strategies to address those challenges. Strategies to mitigate the harms of research include patient and public engagement, building reciprocal trust, and developing a respectful approach to data use. These strategies are necessary to protect the rights and well-being of those represented in the data and to advance health equity for all.

Concurrent Session 1

Health data are essential for delivering high quality public health care services. They are also essential for ensuring the quality, equity and safety of services and health systems; for understanding why some people are healthy and others are not; and for creating new drugs, interventions and devices that can improve lives. But not all uses of health data are equal. Some have obvious public benefit and little risk, while others involve trade-offs. Public assemblies, deliberations, and other forms of deep public involvement are ways to get policy advice on acceptable trade-offs and what makes a trustworthy health data system. Alies Maybee and Dr. Kim McGrail share how these types of public involvement can have a positive impact on the conversation about health data.

Concurrent Session 2

Canadian health research cannot happen without access to personal health information. But in order to earn and maintain the trust of the public, communities, and researchers alike, an understanding of when and how personal health information can be accessed and used for research is critical. In this session, Dr. Donna Curtis Maillet will shed light on common misunderstandings of what can and cannot be done with respect to personal health information in research. She will discuss patient rights and shared requirements across Canada that help to ensure personal health information is protected during the research process.

Concurrent Session 2 / Bilingual

A vast reform of the Quebec health care system is underway, and the transformation of the legal regime surrounding the collection and use of health information is an important pillar. In this session, Dr. Jean-Frédéric Ménard will present the work carried out by his research team to identify the Quebec population’s expectations around the regulation of health data, examining the changes made to Quebec’s legal framework, notably through the Act Respecting Health and Social Services Information adopted in 2023.

Light refreshments for in-person attendees will be served at Le Westin Montreal.


Moderated by Rob Semeniuk, panelists Dr. Alison Paprica, Dr. Andrew Pinto and Dr. Cécile Petitgand will discuss emergent and burning issues coalescing around AI and the use of big data, including public mistrust, embedded bias, privacy concerns and the need for data literacy and ethical guidelines.