Data, Power, and People: Toward Inclusive and Community-Led Governance in Health Research

Abstract

Equitable research begins by examining who holds power in the research process, how that power is exercised, and whose voices are excluded or marginalized. Globally, visible minority and Indigenous communities have historically experienced research that was extractive, harmful, or conducted without meaningful participation or consent, shaping understandable mistrust toward academic institutions. Addressing these imbalances requires more than ethical intentions. It requires structured approaches that embed equity into how data is collected, governed, interpreted, and shared. Data governance offers a practical pathway for this transformation. Frameworks such as FAIR (Findable, Accessible, Interoperable, and Reusable), OCAP (Ownership, Control, Access, and Possession), CARE (Collective Benefit, Authority to Control, Responsibility, and Ethics), and EGAP (Evidence in Governance and Politics), along with models like Bruhn’s spectrum, outline principles that balance access, accountability, autonomy, and community rights. When implemented collaboratively, these approaches reposition communities as partners and decision-makers rather than subjects of inquiry. Ethical data governance therefore strengthens research relationships by promoting equity, transparency, and inclusion, while preventing the reproduction of past hierarchies.