ArticleBMJ open2026
Building capacity for patient advocacy in liver health: a cross-country qualitative study.
Article in BMJ open, 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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5 authors.
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Abstract
objectivesTo explore how patient advocates active in liver health understand and enact meaningful advocacy across diverse cultural and health-system contexts and to identify empirically grounded competencies that can inform evidence-based training and capacity building for patient advocacy.
designCross-country qualitative study using a focused ethnographic approach, based on in-depth semi-structured interviews and reflexive thematic analysis.
settingPatient advocacy organisations active in liver health at local, national and international levels across Europe and selected non-European contexts.
participants23 experienced patient advocates affiliated with liver disease patient organisations in 17 countries.
methodsSemi-structured interviews were conducted via videoconferencing. Data were analysed following a reflexive thematic analysis approach, with maximum-variation purposive sampling to capture diversity in advocacy roles, experience and health-system contexts.
resultsFive interrelated themes were identified, conceptualising patient advocacy as a relational and value-driven practice enacted across multiple levels of action. Findings highlighted a set of communicative, ethical, strategic, emotional and contextual competencies that advocates progressively develop to translate lived experience into system-relevant action. Advocacy was described as shaped by structural constraints, cultural norms and emotional burden, requiring adaptive strategies and sustained reflexive learning.
conclusionsPatient advocacy in liver health relies on a constellation of competencies that extend beyond lived experience alone and can be explicitly supported through structured training. By articulating these competencies, this study provides an empirical foundation for developing evidence-based educational tools for patient advocates and for strengthening mechanisms that integrate experiential knowledge into health policy and governance, including "Listening-Informed" Policy approaches.
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