CO-14 | BEYOND BLEEDING: NARRATIVE MEDICINE AS A METHODOLOGICAL TOOL FOR INVESTIGATION AND CARE IN CONGENITAL BLEEDING DISORDERS

V. Grippa¹, S. Riva², A. Gringeri³ | ¹Centro Malattie Emorragiche Salerno, Italy; ²St. Mary's University, London, UK; ³Fondazione Charta, Milano, Centro di Solidarietà Solidale, Lucca, Italy

The approach to congenital bleeding disorders (CBDs) cannot be limited solely to biological parameters and therapeutic outcomes in clinical practice. Alongside the pathophysiological dimension of disease, there is also an experiential dimension involving quality of life, relationships, identity, body perception, treatment adherence, and emotional experience. This highlights the need to integrate Evidence-Based Medicine (EBM) with tools capable of rigorously and systematically exploring the subjectivity of the illness experience. Within this perspective, the Academy of Narrative Medicine for Congenital Bleeding Disorders was established with the aim of promoting Narrative-Based Medicine (NBM) as a qualitative, methodological, and educational approach in the field of CBDs. NBM is not conceived in opposition to EBM, nor as a merely communicative or testimonial practice, but rather as a complementary and integrative dimension of clinical knowledge. EBM and NBM represent two epistemologically convergent approaches: the former is oriented toward the interpretation of biological and clinical evidence, and the latter is aimed at understanding the lived experience of illness. Both contribute to the development of more appropriate, personalized diagnostic and therapeutic pathways that better reflect the complexity of the individual. The Academy applies NBM through structured and scientifically grounded methodologies for the collection, analysis, and interpretation of narratives from patients, caregivers, and healthcare professionals. Narratives are considered qualitative data suitable for systematic interdisciplinary analysis, with the aim of identifying unmet needs, care-related challenges, therapeutic barriers, psychosocial vulnerabilities, and dimensions of illness that cannot be detected through conventional clinical tools. Through narrative workshops, educational activities, interdisciplinary research, and collaborations with Hemophilia Centers, the Academy promotes an integrated model of care in which clinical and narrative data mutually contribute to a deeper understanding of disease. In this sense, NBM emerges as a qualitative investigative tool capable of broadening the clinical perspective without replacing it, thus contributing to the evolution of healthcare models that are increasingly person-centered and aligned with the principles of precision medicine. The Academy therefore seeks to propose an innovative approach to CBDs, in which listening to illness narratives is not considered an accessory element but rather an essential component of the care process, capable of integrating scientific evidence and lived experience within a single healthcare paradigm.