BMJ open · 2026
Building capacity for patient advocacy in liver health: a cross-country qualitative study.
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Barello Serena, Monaci Michela, Credi Beatrice, Korenjak Marko, Bigi Sarah
Аннотация
OBJECTIVES: To 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.
DESIGN: Cross-country qualitative study using a focused ethnographic approach, based on in-depth semi-structured interviews and reflexive thematic analysis.
SETTING: Patient advocacy organisations active in liver health at local, national and international levels across Europe and selected non-European contexts.
PARTICIPANTS: 23 experienced patient advocates affiliated with liver disease patient organisations in 17 countries.
METHODS: Semi-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.
RESULTS: Five 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.
CONCLUSIONS: Patient 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.
DESIGN: Cross-country qualitative study using a focused ethnographic approach, based on in-depth semi-structured interviews and reflexive thematic analysis.
SETTING: Patient advocacy organisations active in liver health at local, national and international levels across Europe and selected non-European contexts.
PARTICIPANTS: 23 experienced patient advocates affiliated with liver disease patient organisations in 17 countries.
METHODS: Semi-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.
RESULTS: Five 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.
CONCLUSIONS: Patient 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.