A Seat at the Table, But on Whose Terms? The Illusion of Meaningful Engagement

While meaningful engagement of people living with health conditions is increasingly recognized as essential for the design of equitable and effective healthcare, research, and policy, tokenism persists across the global landscape. Despite the development and dissemination of frameworks and resolutions advocating for engagement, lived-experience contributors, as the authors of this article, still report feeling relegated to the margins of milestone meetings, signaling performative inclusion rather than genuine shared leadership. Instances of denied compensation, inferior housing accommodations, and unequal treatment further underscore a profound lack of respect and undermine any pretense of partnership. The foundational "nothing about us without us" remains absent from key global health resolutions and only deepens these concerns. This article contends that true meaningful engagement demands the embedding of nonnegotiable principles, including: substantive integration of lived experience throughout decision-making, equitable reimbursement, and resource parity. To move beyond mere symbolic gestures toward authentic partnership is not just ethical, it is essential for building trust and achieving truly people-centered systems.