Across Europe, patient advocacy is undergoing a profound transformation. What was once associated mainly with awareness campaigns, peer support and occasional consultations is now increasingly integrated into the core of healthcare system decision-making processes. Patient representatives are invited to contribute to regulatory discussions, health technology assessments, research design and policy development. Their presence is no longer peripheral. It is expected. Yet this evolution has brought to light a structural gap.
While institutions ask patient representatives for an ever greater contribution, the systems that support their development have not evolved at the same pace. The term “expert patient” is widely used, but rarely defined. Expectations are high, but preparation remains uneven. Advocacy is recognized as important, but it is not yet structured as a competence that can be developed, assessed and supported systematically. It is in this context that the ICONIC project was born.
The initiative emerged within the European Liver Patients’ Association (ELPA), reflecting a growing awareness among patient leaders that advocacy was becoming more central, but also more complex and uneven. ELPA recognized that, if patients are increasingly asked to contribute to policy, research and regulatory discussions, then advocacy itself needs stronger and more structured foundations. To address this need, ELPA collaborated with the WHYpsy Lab of the University of Pavia, bringing together patient leadership and academic expertise to jointly explore how advocacy can be better understood, supported and strengthened. More specifically, the project was conceived to clarify what advocacy means in practice, which skills it requires and how these can be translated into structured pathways of learning and participation.
Liver health was chosen as a starting point because it represents an emblematic example of the broader challenges facing European healthcare systems. Conditions such as metabolic dysfunction-associated steatotic liver disease, viral hepatitis and alcohol-related liver disease are highly prevalent, often underdiagnosed and deeply influenced by social determinants such as stigma, health literacy and access to care. Despite the availability of clinical guidelines and effective interventions, outcomes remain uneven across countries. Liver health therefore offers a clear illustration of the gap between what healthcare systems know and the way that knowledge is translated into practice.
This field also highlights the importance of listening. For years, patient involvement has been framed mainly as consultation.
Patients are often asked to share their perspectives, particularly in the final stages of decision-making. Although this has improved visibility, it has not substantially changed the way evidence is generated. The concept of “Listening-Informed Policies” reframes patient input as a form of evidence. It recognizes that lived experience, if collected and analyzed systematically, can reveal patterns that do not emerge from clinical or epidemiological data. It can explain why prevention strategies do not reach certain populations, why diagnosis is delayed and why care pathways are interrupted. Listening, in this sense, becomes a method for understanding how healthcare systems are actually experienced.
For listening to function as evidence, however, it must be structured. This is where ICONIC offers its most relevant contribution. Instead of treating advocacy as an informal or purely experiential activity, the project considers it a form of knowledge production. Through a combination of international literature review, qualitative research in several European countries and ongoing collaboration with patient leaders, ICONIC - also presented at the European Parliament in December 2025 - has worked to define what meaningful advocacy means in practice. In particular, the project developed in three interconnected phases: first, an international scoping review on how advocacy is defined, practiced, taught and evaluated; second, qualitative research in several European countries to explore how advocacy is experienced by patient representatives in real-world contexts (currently under publication); third, the translation of these findings into an educational framework (a workshop with ELPA members is planned for May 2026). The project identifies the skills needed to participate effectively in governance processes and recognizes that advocacy is not a single role, but a spectrum of profiles requiring different levels of competence.
This work is not only conceptual; it also leads directly to the development of a structured educational pathway: the Hybrid Advocacy School for Liver Health.
This initiative aims to translate the competency framework into a practical learning environment, combining theoretical modules on healthcare systems, ethics and communication with experiential components such as advisory board simulations and policy discussions. It reflects the awareness that a paradigm shift in patient involvement cannot happen from one side alone. If patients are expected to contribute meaningfully to complex governance processes, institutions too must evolve in how they understand and integrate such contributions. For this reason, the training model includes moments of shared learning, in which different stakeholders can engage with the logic of structured participation and experience its added value.
In this way, education becomes a bridge, linking lived experience with evidence and participation with decision-making. It helps move patient advocacy from informal, often invisible work toward a recognized and supported component of how healthcare systems function. The implications go beyond liver health because, by linking listening, training and governance, ICONIC offers a model that can also be adapted to other therapeutic areas. It provides a way to strengthen the role of lived experience in shaping policies that are not only evidence-based, but also more responsive to people’s realities. The project’s preliminary results suggest that advocacy is consistently understood as a value-driven practice, oriented toward systemic change, equity and social justice, but that its definitions, roles and evaluation criteria remain fragmented. This is precisely why more structured frameworks and dedicated training pathways are needed.
The question healthcare systems are asking today is no longer whether patients should be involved. That question has already been answered. The real challenge is how to make that involvement meaningful, sustainable and capable of improving decisions. ICONIC suggests that this requires a shift: moving from participation as an aspiration to participation as infrastructure.
Beatrice Credi, ELPA
For more information:
beatrice.credi@elpa.eu; michela.monaci01@universitadipavia.it; serena.barello@unipv.it
