A conversation on Narrative Medicine across borders

by Maria Giulia Marini and Stefania Polvani

SP. Maria Giulia, we met at least ten years ago. You phoned me, you had just published an interesting article in the Sole 24 Ore Sunday paper, we had never met, but we knew the work we were doing, each in the field of Narrative Medicine in different places, with perhaps different methods, but with equal motivation. Today we work together in SIMeN, the Italian Society of Narrative Medicine, and in these years Narrative Medicine has had a significant development in Italy, there is growing networking of projects and people who are promoting its culture and dissemination in the practice of care. And among our projects, there is the promotion of European society. Would you like to remind us how the idea was born? And why?

MGM. EUNAMES, the European Narrative Medicine Society, was born from a joint idea with Prof. Antonio Virzì, founder in 2009 of the Italian Society of Narrative Medicine. EUNAMES starts from the substratum of international networking that was already in SIMeN’s mission, to widen the debate on Humanities for Health and Narrative Medicine beyond Italy to take it to Europe and the world. There is no sense in localism, but the beauty of these challenging themes in interdisciplinarity is the continuous comparison with other schools, other approaches, and other practices. I believe that health care is at a turning point: the need for narrative is now present all over the world, and this era of COVID-19 is also fully demonstrating this. If beds are fundamental, the understanding of the correct therapies, as well as the lockdown was necessary, the predominant voice is coming out, in all countries, of the experiences lived by health professionals, patients, citizens, politicians. In the beginning, we believed that the narrative would “disappear” to give way to technology and then we realized that the human being, wherever he/she was, asked loudly to be there, to participate. That’s why we built with a voluntary network of EUNAMES the Pillar Chart for “well-being” during the lockdown. None of the countries backed down. Europe, Canada, America, Australia.

SP. We have always maintained that Narrative Medicine belongs to everyone. You say, and I agree, “broaden the comparison and challenge localisms”. International networking has long been in your work and SIMeN’s mission. So why EUNAMES, a European Society and not a more comprehensive global network?

MGM. In 2016 the guidelines of the Cultural contexts for health group came out from WHO-Europe, which concerned narrative research and in 2019 another document, also from WHO-Europe, which involved the use of art therapy and other healing languages that fall within the sphere of Humanities for health. Working with them to revise the narrative research guidelines and with other European countries, the most natural step was to address Europe, not that of the European Union, but that of 53 countries, which also includes Israel and Russia: in short, a very challenging experience. We obtained in February 2020 a commendation from WHO Europe, and a recommendation, that of not leaving alone the professionals who deal with these disciplines who often work outside centres, independently. Even in solitude. People who believe it, extremely competent, but involved in Evidence-Based Medicine organizations. But beyond Europe, this society wants to open itself to all those who also in other continents wish to deal with plurality: we do not impose a model, a practice of how to do or teach narrative medicine. But we also open up to people interested in other continents. No imposition, but exchange and welcome. Opening up borders is more necessary than ever in a world that has suffered isolation and now social distancing.

SP. Who is in EUNAMES? What are the exciting experiences?

MGM. That’s a difficult question you ask me because there are so many exciting voices! I start from Portugal, from the University of Porto: Susana Magalhães, philosopher, studied vulnerability and fragility, she organized excellent seminars with photographers inside the hospital, as well as classical teaching with doctors and nurses, in short, a place of versatility. Then I think of John Launer, Physician and Group Therapist, one of the principal founders of narrative medicine had the great merit of exporting it beyond the university and applying it everywhere, in every social and health context. Jonathan Mc Farland, who has put together a teaching network with Sechenov University in Moscow dedicated to doctors and future doctors, The doctor as a humanist. Carol-Ann Farkas who, by teaching future pharmacists, nurses and doctors, promotes Humanities, fine arts and literature with them. At the university. Not in high school. Stephen Legari who, in Montreal, together with the director of the Museum of Fine Arts, managed to persuade the community of general practitioners in Quebec to prescribe guided visits to patients in a medical prescription book to assess their state of well-being. And then again, the Lisbon group directed by Isabel Fernandez, the Marie Curie in Paris who want to analyze the narrations of cancer patients with narrative medicine… many, all wonderful.

SP. All wonderful and very innovative in the Personal Care scenario. You describe a scene that is very similar to the Italian one, where creative and sometimes challenging projects proliferate, even in synergy. Maria Giulia, what is the first project of EUNAMES?

MGM. We want to understand who makes humanities for health and narrative medicine in the Europe of 53 countries: we are looking for them one by one, through the keywords in their respective languages concerning the world of humanities in the field of health. Universities, centres, studies, small realities. With them, we intend to do a survey, to understand not only what kind of activities they do, but above all their stories as professionals. How did they approach these disciplines? When and why did the spark start? There are hundreds of surveys on what the centres do, what operations they have and their range of action, but none so far in our field has ever investigated the reasons, the values that have driven people to deal with these arts/disciplines. It is an act of real knowledge of those who work like us, and not just a matter of filing names. This could also lighten the sense of loneliness that is brought as the first datum of reality in many European classrooms during narrative medicine courses; how many professionals we have listened to who told us, “Narrative medicine is wonderful, but then how can I apply it in my reality?”. We are convinced that narrative will be more and more critical, and the proof is the swarming of the many initiatives underway. This survey also serves to build valuable European partnerships between interdisciplinary professionals united by a shared passion: to research to improve the quality of care and the very well-being of professionals. Doing research, not just networking: it is the joint project that motivates and unites.

SP. There are synergies as well as loneliness in Italy too. SIMeN is at the service as a meeting point, as we say in the Statute, given its multidisciplinary vocation, it is for health and social workers, researchers, individuals who possess skills or intend to train in Narrative Medicine and/or who recognize themselves in SIMeN’s aims. At this moment, to offer concrete synergies, we are working on the R-Esistere project, we no longer count the subjects who have joined. R-Esistere promotes the collection of stories in time of COVID-19 to unite people to numbers, narration to science.

MGM. We can immediately translate the narrative plot of R-Esistere, a fantastic project, and make it choral in Europe and the other interested countries: EUNAMES acts as an intermediary for the collection of narratives. Today we are lucky to have good translators online so that we can collect the narratives in other languages: of course, the translation will never be perfect, but at least we will get the sense of what is happening with the pandemic in the world and the different experiences.

Pandemic or not, the appointment we want to realize is in 2022, in Southern Italy, in Catania, for a congress intertwined between SIMeN and EUNAMES: not abroad but in our frame, and not in the usual cities Rome, Milan that see most of the events, but in a town that has seen perhaps the highest number of people that have followed one another in its territory. A volcanic city, of course: behind it is Etna, the highest volcano in Europe.

SP. Thanks, Maria Giulia. The volcanicity of Catania perhaps also suits all those who promote narrative medicine, in Italy and beyond the border.

MGM. Yes. And I won’t add any more narrative.

We invite everyone to stay connected, currently participating in SIMeN’s R-Esistere project and preparing for EUNAMES and CATANIA 2022.

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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