{
  "abstract": "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.",
  "authors": [
    {
      "affiliations": [
        "WHYpsy Lab, Department of Brain and Behavioural Sciences, University of Pavia, Pavia, Italy",
        "Applied Psychology Unit, IRCCS Mondino Foundation, Pavia, Italy"
      ],
      "name": "Serena Barello"
    },
    {
      "affiliations": [
        "WHYpsy Lab, Department of Brain and Behavioural Sciences, University of Pavia, Pavia, Italy"
      ],
      "name": "Michela Monaci"
    },
    {
      "affiliations": [
        "European Liver Patients’ Association – ELPA, Bruxelles, Belgium"
      ],
      "name": "Beatrice Credi"
    },
    {
      "affiliations": [
        "European Liver Patients’ Association – ELPA, Bruxelles, Belgium",
        "Faculty of Government and European Studies, New University, Kranj, Slovenia"
      ],
      "name": "Marko Korenjak"
    },
    {
      "affiliations": [
        "Department of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, Milan, Italy"
      ],
      "name": "Sarah Bigi"
    }
  ],
  "title": "Building capacity for patient advocacy in liver health: a cross-country qualitative study",
  "uid": "42e986d4-c036-5e60-818a-64ba5ddb4bde"
}