ArticleJournal of patient experience2025
A Seat at the Table, But on Whose Terms? The Illusion of Meaningful Engagement.
Article in Journal of patient experience, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
Indexed as
Identifiers
What Socratic holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.