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Rare diseases and Narrative Medicine: an interview with Domenica Taruscio

We are pleased to publish an interview with Domenica Taruscio, MD, Research Director and Director of the National Center for Rare Diseases at the Italian National Institute of Health (Istituto Superiore di Sanità – ISS). She was President of the International Conference for Rare Diseases and Orphan Drug (2010-2012), the Italian member of the Committee for Orphan Medicinal Products at the EMA (2000-2009). She is a member of the Committee of Experts on Rare Diseases of the European Commission, a Member of the Health Research Advisory Group of the European Commission, of the Interdisciplinary Scientific Committee of IRDiRC, and of the national group for coordinating and monitoring the European reference networks. She is the scientific coordinator of numerous European and international projects including Rare diseases without a diagnosis (Italy-USA), Undiagnosed Diseases Network International (UDNI), EUROPLAN, EPIRARE, RARE-Best practices and WP Leader in EUROCAT and RD-Connect. She is a referee for numerous scientific journals and Editor-in-Chief of Rare Diseases and Orphan Drugs — An International Journal of Public Health.

Q. You were the first to bring Narrative Medicine in the field of rare diseases in Italy. Where did this initiative come from?

DT. It was 2002. Almost seventeen years have passed since I first introduced Narrative Medicine at the National Health Institute (Istituto Superiore di Sanità, ISS) as part of the four-years research project I coordinated, funded by the European Commission and called NEPHIRD (NEtwork of Public Health Institutions on Rare Diseases). NEPHIRD involved fifteen countries; among its purposes, there was the evaluation of the quality of life of people affected by rare diseases. In this context, we began to talk about Narrative Medicine, for the first time at ISS. In particular, together with Professor Gaia Marsico (then working at the University of Padova) and other project partners, including sociologists and public health experts, we started to organize some focus group with patients, familiars, and professionals to listen to, collect, and analyze their stories. From their narratives, solitude and isolation experiences emerged, but also stories of courage. Indeed, rare diseases, often misunderstood also by most expert clinicians, widened even more than today the loss and suffering in patients, and feelings of impotence in professionals. The scientific knowledge was more limited, and information circulated slower than today, both in the associative world and among professionals. We must add to this scenario the complexity of the clinical management of rare diseases, due not only to their numerousness (about 8.000 different pathologies) and heterogeneity but also to the variability of clinical manifestations and the scarce therapeutic possibilities.

This project taught us that listening to illness narratives helps to relocate and to understand people in their specific context, to focus on health needs and questions, as well as new proposals that may arise from illness and life experiences, and to undertake new intervention strategies. The illness experience builds a specific, unique and precious skill. The collection of testimonials offers the opportunity to contextualize clinical data and identify unmet needs. Not only. Narrative is a “high” form of participation and involvement: it has to do with becoming aware of having rights and having a valid and non-delegable experience. Therefore, narrative and attentive listening to personal experience should always have a significant role in care relationships to transform this experience into a resource. Listening and collecting stories of illness and life makes possible constructing shared care pathways. It promotes trust and strengthens the therapeutic alliance, leaving room for the relationship and helping to diminish defensive medicine practices. Not least, it can stimulate new training paths based on the experience and competence of patients and family members.

This project aimed to promote a culture of participation in the various subjects involved in rare diseases and aimed to integrate the data collected through a questionnaire into the research on “Accessibility and quality of Italian socio-health services for patients with rare diseases”. We realized that even more than in other pathologies, in rare diseases, it is necessary to pay attention to the relational dimension and take into consideration the condition in its various meanings. That is, as illness (the patient’s experience), as a disease (the disease intended in biomedical terms) and as sickness (the social perception of the disease).

For this reason, Narrative Medicine is one of the tools that the National Centre for Rare Diseases uses to promote the active participation of patients and to improve the functioning of the care system.

Q. What are the first initiatives that the National Health System has organized on Narrative Medicine, in addition to the 2014 Consensus?

DT. In recent years many activities have been conducted: as already mentioned, the first initiative was the 2002 European project NEPHIRD, which brought out Narrative Medicine in some international conferences dedicated to rare diseases we organized at ISS. In particular, I remember one we carried out in September 2006 with the participation of various experts, including some representatives of the European Commission. Other research, training and information activities followed, both at a national and international level. For example, the Story Telling on Record (SToRe) project, coordinated by Dr Amalia Egle Gentile, contact person for Narrative Medicine activities of the National Centre for Rare Diseases, was an international partnership aimed at studying the integration of Narrative Medicine in the clinical chart and funded by the European Commission under the Lifelong Learning Program 2013-15.

Among the first initiatives, in addition to the collection and study of the stories, there are conferences with guests of the calibre of Rita Charon, Brian Hurwitz and the dear departed Gianni Bonadonna.

In particular, the First National Congress Narrative Medicine and Rare Diseases, in 2009, was the occasion to reunite for the first time all those who had dealt with Narrative Medicine at a national level. This also to understand how to extend our work to rare diseases, in terms of theoretical approaches and real experiences. We can consider the Acts of the Congress a moment of sharing for experts, for those who had ventured in this context, and a starting point for those who wanted to join it.
Progressively, the experiences have multiplied. So, we felt the need to “clarify”: this is how the Consensus Conference for Guidelines for the use of Narrative Medicine in clinical and care-setting and chronic-degenerative diseases was born.

Q. The 2014 Consensus Conference included chronic diseases: a relevant leap. What does it matter for Healthcare?

DT. We may say that rare diseases are often chronic and disabling pathologies plus rarity. These are complex conditions requiring multidisciplinary and multi-specialist management: so, we could suppose that, if a methodology or an approach does work with rare diseases, probably it will be applicable even in the context of chronic and frequent pathologies. We also decided to clarify that Narrative Medicine can be used in the clinical care setting both for rare and chronic-degenerative diseases. In part to remove any doubt about it, in part for a sort of “debt of loyalty”, since Narrative Medicine was born precisely in the context of chronic diseases, specifically the oncological ones.

Q. Narrative Medicine often concentrated on patients. What can we do, instead, for professionals?

DT. Narrative Medicine offers “wide margins of action”, not only for patients and family members but also for all those who, for different reasons, are part of the care team. As described in the third recommendation of the Guidelines, we can use Narrative Medicine in many areas, also for professionals: specifically, to improve the care team functioning, as well as professional and emotional awareness, and – not least – for preventing burn-out.

Q. What are the future developments that the ISS wishes to undertake regarding Narrative Medicine?

DT. The ISS, with the National Center for Rare Diseases, is developing several activities in the Health Humanities field, ranging from education, research, communication to the dissemination of knowledge on rare diseases through approaches, unusual for us, such the School-Work Alternation and the Art. I take this opportunity to share with the readers that registrations are open for the XII edition of the literary, artistic and musical competition “Il Volo di Pegaso” (Pegasus’ Flight), a contest on which we have recently published an article in The Lancet Neurology.

I am pleased to anticipate to you important news on Narrative Medicine.

Five years after the publication of the Guidelines for the use of Narrative Medicine in the clinical-care setting for rare and chronic-degenerative diseases, we are launching a new research project, aimed at evaluating their use and application contexts (in healthcare facilities and patient associations), also considering digital transformation.

In continuity with the Guidelines and in light of the Narratives and technologies. How stories change and their use in the digital health era workshop, the project provides specific attention to scientific aspects and communication related to rare diseases and the role of Narrative Medicine. The governance of the project, articulated in an inclusive perspective, will see the participation of multiple subjects, including – I can anticipate – Maria Giulia Marini of the ISTUD Foundation on the Advisory Board.

Soon we will publish information about the project and the Call for Partnership to select Scientific Societies, Professional Orders and Associations as Collaborating Partners: I would, therefore, invite readers to monitor our website!

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