Project "VISION AMD": a concrete example of Narrative Healthcare

Vision AMD - Maria Giulia MariniThe project “VISION AMD: Value in Stories of Illness on Neovascular Wet AMD”, has aimed to map the journey of people with wet macular degeneration with the support of twelve Italian centers of Ophthalmology, and to analyze this journey collecting narratives of patients, caregivers, and healthcare professionals.

It has been applied a methodology that we can define with the neologism of “Narrative Healthcare”, where patients’ and caregivers’ narratives are useful to reorganize early diagnosis pathways, prompt intervention, and rehabilitation of people affected by age-related macular degeneration.

It is interesting to see how, through narratives collected in day-hospitals, people confused us for an additional service offered by the hospital, witnessing the necessity of a listening-point for patients, in a healthcare model growing through multidisciplinary team and involving several professional figures.

So, not just Narrative Medicine in the doctor-patient relationships, but Narrative Healthcare, including several roles: physicians, nurses, therapists, facilitators, social assistants, educators, and the many other healthcare professions.

Narrative Healthcare because it reveals also the patient’s step before arriving in the expert center – journeys often roving and consuming Healthcare System and familiar resources. Narrative Healthcare because it does epidemiology, that is discloses that 50% of people do not know the disease at the diagnosis.

Maria Giulia Marini

Epidemiologist and counselor in transactional analysis, thirty years of professional life in health care. I have a classic humanistic background, including the knowledge of Ancient Greek and Latin, which opened me to study languages and arts, becoming an Art Coach. I followed afterward scientific academic studies, in clinical pharmacology with an academic specialization in Epidemiology (University of Milan and Pavia). Past international experiences at the Harvard Medical School and in a pharma company at Mainz in Germany. Currently Director of Innovation in the Health Care Area of Fondazione ISTUD a center for educational and social and health care research. I'm serving as president of EUNAMES- European Narrative Medicine Society, on the board of Italian Society of Narrative Medicine, a tenured professor of Narrative Medicine at La Sapienza, Roma, and teaching narrative medicine in other universities and institutions at a national and international level. In 2016 I was a referee for the World Health Organization- Europen for “Narrative Method of Research in Public Health.” Writer of the books; “Narrative medicine: Bridging the gap between Evidence-Based care and Medical Humanities,” and "Languages of care in Narrative Medicine" edited with Springer, and since 2021 main editor for Springer of the new series "New Paradigms in Health Care."

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