IJPDS International Journal of Population Data Science

How can health data research better reflect the diversity of the people it is intended to serve?

A newly published study published in the International Journal of Population Data Science (IJPDS) describes how Health Data Research Network Canada (HDRN Canada) developed a national strategy to help make health data research more equitable, inclusive, and responsive to the needs of diverse communities.

Health data research plays a vital role in understanding population health and informing healthcare services, policy, and resource allocation. However, the data systems and research practices that support this work do not always capture the experiences of all populations equally. Important information relating to factors such as race, ethnicity, gender diversity, disability, housing status, and other social determinants of health may be missing, inconsistently collected, or difficult to use. As a result, some communities can remain invisible within research and the decisions that follow.

Recognising these challenges, HDRN Canada worked with representatives from its member organisations, researchers, leadership teams, and public advisors to develop an Inclusion, Diversity, Equity and Accessibility (IDEA) Strategy as part of its broader strategic plan. Rather than taking a top-down approach, the strategy was developed through extensive collaboration across Canada’s population data science community.

The study outlines a five-phase process that included environmental scanning, stakeholder engagement, facilitated discussions, interviews, consensus-building activities, and multiple opportunities for feedback. This collaborative approach helped ensure the strategy reflected a broad range of perspectives and experiences.

The resulting IDEA strategy is organised around four interconnected priorities: Learning and Unlearning, Facilitating IDEA in Research, Cultivating Trust and Reciprocity, and Providing Leadership and Advocacy. Together, these priorities provide a practical framework for embedding inclusion, diversity,  equity, and accessibility within health data research and research infrastructure.

The authors also identified several key lessons from the strategy development process, including the importance of creating space for different perspectives, investing in skilled facilitation, and ensuring visible leadership commitment throughout the process.

As health data research continues to grow, many organisations are seeking practical ways to embed equity and inclusion into their work. The authors suggest that HDRN Canada's experience provides a model that other research networks can adapt, helping move from broad commitments towards meaningful action.

Rather than an endpoint, the strategy provides a roadmap for continued action, with implementation already underway across HDRN Canada's four priority areas. The research highlights the importance of building research systems that are not only scientifically robust, but also inclusive, representative, and worthy of public trust.

 

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Morgan Stirling, MSc, PhD (C), Health Data Research Network Canada, University of Manitoba, College of Community and Global Health

Stirling, M. (2026) “Co-creating an Inclusion, Diversity, Equity, and Accessibility (IDEA) Strategy in a Pan-Canadian Health Data Research Network ”, International Journal of Population Data Science, 11(1). doi: 10.23889/ijpds.v11i1.3429.