ArticleHealth expectations : an international journal of public participation in health care and health policy2026
From Participation to Evidence: Listening-Informed Policies and the Epistemic Role of Lived Experience in Population Health.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Health policies and public services are increasingly expected to be evidence-based, equitable and accountable at the population level. Yet the forms of evidence most commonly prioritised in policy-making often fall short of capturing how health risks, services and prevention strategies are experienced and navigated across social groups and communities. This gap contributes to persistent mismatches between policy intent and lived social realities, with tangible consequences for population health outcomes, equity and public trust. Drawing on democratic accounts of policy legitimacy, scholarship on civil society as a knowledge intermediary and emerging regulatory recognition of experiential evidence, we propose Listening-Informed Policies (LIP) as a governance-oriented approach to population health decision-making. We argue that listening constitutes a methodologically grounded epistemic practice oriented toward collective knowledge production. When institutionalised, listening can inform population-level problem definition, policy design, implementation and evaluation, rather than serving merely as a legitimacy-enhancing exercise. Using liver health as an illustrative context, we outline the core principles of LIP and consider their relevance for the prevention of non-communicable diseases. Embedding experiential knowledge alongside biomedical and economic evidence-through organised civil society acting as an institutional intermediary-can strengthen population health governance on three complementary grounds: (i) democratically, by enhancing the legitimacy of decisions through the inclusion of affected populations; (ii) epistemically, by rendering visible social mechanisms and constraints not captured by conventional indicators, and (iii) pragmatically, by improving the alignment between policy design and real-world implementation. LIP integrate these dimensions by positioning listening as a structured form of population-relevant evidence. Public and Patient Contribution: This viewpoint article was developed in collaboration with representatives and stakeholders engaged in the liver disease community, including perspectives emerging from patient advocacy and public engagement initiatives promoted within the European liver health landscape. The reflections presented in this paper were informed by ongoing dialogue with people living with liver conditions, patient advocates, clinicians, and researchers involved in initiatives aimed at strengthening meaningful patient involvement, communication, and advocacy in hepatology. These experiences contributed to shaping the focus and critical reflections discussed throughout the viewpoint.
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