Building Canada’s Health Information Ecosystem Through Equitable Approaches to Public, Patient, and Community Engagement

The Pan-Canadian Health Data Charter (the Charter) provides a strong foundation for Canada's strategy to building a trustworthy and adaptable health information ecosystem. A key requirement is to ensure that governance mechanisms are informed by the views of the public, raising important questions about what constituencies make up "the public" and what inclusion looks like in practice. In this article, we use health data justice as the theoretical basis to justify the importance of centring equity in inclusionary efforts and outline key considerations for involving diverse members of the public, patients, and communities in advising health information systems and policy. We suggest that engagement should be fit-for-purpose, marrying the methods and selection of participants with overarching goals, and multi-modal, employing multiple methods to facilitate wider participation from individuals with varying needs. We also recognize the importance of long-term partnerships between civil society organizations, policy actors, and researchers to ensure that the needs and preferences of structurally marginalized groups are prioritized in engagement initiatives and downstream policy decisions.