From Participation to Evidence: Listening‐Informed Policies and the Epistemic Role of Lived Experience in Population Health

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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Publication Details

Journal
Health Expectations
Published
2026-05-22
DOI
https://doi.org/10.1111/hex.70696
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00
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article

From Participation to Evidence: Listening‐Informed Policies and the Epistemic Role of Lived Experience in Population Health

Sarah Bigi, Marko Korenjak, Michela Monaci, Beatrice Credi et al.
Health Expectations
Mental Health and Patient Involvement
article

From Participation to Evidence: Listening‐Informed Policies and the Epistemic Role of Lived Experience in Population Health

Sarah Bigi, Marko Korenjak, Michela Monaci, Beatrice Credi, Serena Barello
article en

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.

Health ExpectationsVol. 29(3)
University of Pavia (IT), European Federation of Allergy and Airways Diseases Patients Associations (BE), Graduate School of Government and European Studies (SI), University of the Sacred Heart (JP)
Reduced inequalities
Openalex Percentile: Top 4%
Mental Health and Patient Involvement
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