Evidence map›Paper›PMID 42171387›Full record

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.

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

Abstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Serena BarelloWHYpsy Lab, Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy.ORCID 0000-0002-8514-2563
Michela MonaciWHYpsy Lab, Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy.ORCID 0009-0006-6973-7010
Sarah BigiDepartment of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, Milan, Italy.
Beatrice CrediEuropean Liver Patients' Association (ELPA), Brussels, Belgium.
Marko KorenjakEuropean Liver Patients' Association (ELPA), Brussels, Belgium.

Funding

ELPA
6 · The paper itself

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.

Indexed as

Community ParticipationHealth PolicyPolicy MakingPopulation HealthDecision MakingEvidence-Based PracticeHumansKnowledge

Identifiers

PMID42171387
PMCPMC13239936

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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 OpenQuestion graph.