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.


Written by

Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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