From Advocacy to Impact: The Determinants of Patient Organizations’ Influence in Health Governance
Published:
Sep 22, 2025
Keywords:
Patient organizations Participatory decision-making Epistemic recognition Influence Tokenism Co-optation Co-production
Abstract
Patient participation has become a normative feature of contemporary health governance, yet the influence of patient organizations on decision-making remains uneven and often limited. Existing scholarship has extensively documented participatory mechanisms, but has paid less attention to the conditions under which participation translates into substantive influence. This paper offers a critical and integrative review of the literature on patient organizations in health decision-making, with the aim of clarifying these conditions. It proposes a conceptual framework that brings together four key determinants discussed in the literature: institutional access structures, epistemic recognition and knowledge legitimacy, organizational capacity and representational legitimacy, and the broader political and socio-digital context. The framework is used to examine different participatory modalities and to interpret recurrent barriers, such as tokenism and limited uptake of patient input. Rather than advancing a predictive model, the paper provides an analytical lens for understanding variation in participatory outcomes, and aims to contribute to ongoing debates on the role of patient organizations in contemporary health governance.
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