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Integrating EBM and narrative medicine, towards a real personalisation of medicine

This month’s topic of Chronicle of Healthcare and Narrative Medicine starts from the link between Evidence-Based Medicine and Narrative Medicine: but why does this link exist, and why should it be pursued?

I start by telling about my experience as a participant and speaker at the Metaphor Festival in Amsterdam. This event, which was held at the end of August 2019, saw researchers from all over the world coming to discuss their research in the most diverse areas: from politics to art, from marketing to health. Although the name may evoke the idea of ​​a place where people talk and compare metaphors in a dissertive manner, all participants presented researches carried out with a rigorous methodology and many of the questions asked were precisely on this theme.

In the health field, two presentations have impressed me. The first was the opening lesson given by Anjan Chatterjee of the Center for Cognitive Neuroscience of the University of Pennsylvania: the professor showed how metaphors activate deep brain areas, especially if they are new to the listener’s ear, while “common” metaphors activate the same areas of the literal sentences. This study and the creation of a set of “new” metaphors was the premise for a research, which we could define EBM, on the understanding of the metaphorical language through functional neuroimaging studies in healthy people and on patients with focal brain damage and neurodegenerative disorders. The results have shown that the right hemisphere plays a privileged role in the elaboration of metaphors, contrary to what was previously stated in the literature. If, on the one hand, these results relate to the fact that patients with brain damage to this hemisphere will have greater difficulty in understanding, little is known about how these people live daily with the disease and whether this difficulty in understanding is really perceived.

The second was the presentation by Anke Oerlemans, who described his research in identifying the metaphors used by ethnic minorities and migrants in the Netherlands to describe dementia. Through interviews conducted with the focus group methodology, the objective of the research group is to contribute to bridging the gap in the quality of care for people with dementia of ethnic minorities. This research seems to be very promising, however the stigma linked to dementia (especially in some groups) is making it difficult for researchers to work, because the group interview presupposes a “coming out” that many people are not ready to face.

This second research project is closer to our narrative research methodology. In fact, I presented the results of the TRUST project and in particular the use of metaphors used by patients, family members and doctors to describe heart failure. This analysis showed the semantic misalignment present between the three points of view regarding the vision of the disease. This difference surely helps us in understanding the other, but the question that arises and that have set me is now how to use these results?

Before answering this question, it is right to take a step back and reflect on why Evidence-Based Medicine has been so successful in recent years. The EBM allows us to verify theories, to understand the average behaviour of a population towards a therapy, an intervention or a new approach, it allows us to define categories with which to read the surrounding world. In a world where the complexity of disease management increases and where everything becomes chronic, having schemes, categories, procedures (or guidelines) to follow becomes comforting and allows for preservation, especially when something in the care process does not work. Yet medical malpractice lawsuits are on the rise, more than 50% of doctors say they do not follow the guidelines and more and more scholars are pointing to EBM’s fallacy.

Part of these causes are linked to the deterioration of the figure of the doctors in the eyes of society: if once all relied on their knowledge and “prescriptions”, today people are on average more skeptical and tend to change their figure more easily if find no satisfactory answers. However, this is not the only profession that is facing this situation, on the contrary it seems that the spread of new technologies, Google, and social media has led to a general skepticism towards the authority of all those who were once considered reference figures in society.

A few days ago I was in Milan at an event that talked about the metaphor of the nest in architecture, and an architect and a neuropsychiatrist were present to discuss the topic: part of the discussion focused precisely on the topic of listening and how applying guidelines, trends, predefined categorisations is detrimental to both professions, as they distance from the real needs of the person to whom the services are addressed. The two professionals, to explain their point of view, have brought examples of work failures – and if we return to the health field, on many occasions on this journal we have dealt with the issue of professional burnout and the effects of care relationships’ failures.

And it is precisely when we talk about a care relationship that Narrative Medicine comes into play, and the answer to our question left unanswered returns. If NM, according to the definition of Rita Charon, helps doctors, nurses, social workers and therapists to improve the effectiveness of care by developing the capacity for attention, reflection, representation and affiliation with patients and colleagues, narrative-based research allows to have a starting point to train care professionals on needs, fears, hopes of a specific group of patients. This knowledge is used in training care teams to recover the relational side of their profession that is often overlooked during university courses. Understanding how a person daily lives allows to break down prejudices and stereotypes that have formed over time, and to see the person in front of us in his/her uniqueness, rather than inserting him/her into pre-established categories. And if each patient’s story is different, at the same time many narratives present common traits that allow to highlight the problems most felt by patients, family members and care professionals.

Combining the EBM approach and narrative medicine leads to the real personalisation of medicine, which is not the one that is so often proclaimed by the newspapers, but starts from attentive listening to the person to understand his/her needs and identify, then the most suitable therapeutic strategy. The greatest challenge to Narrative Medicine today is precisely to become a recognised teaching not only by a few, who for passion or casualty approach this discipline, but starting from the universities and addressed to all care professionals.

In Italy there are already some similar experiences, just as some companies begin to insert narrative research into clinical studies, but – citing the words of the Dean of one of these innovative faculties – today doctors follow guidelines because they are afraid of a legal cause, because no one has ever moved a medical malpractice cause for not having been heard. So, the question we ask all of you is: do we really have to come to this? Is society capable of change without the specter of punishment?

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Degree in pharmaceutical biotechnology from the University of Padua and subsequently attended the Master "Scientists in the Company” of ISTUD. Project Manager of the Healthcare Area, Antonietta is an expert in research based on Narrative Medicine and technological innovation applied to research. Expertise in the field of respiratory medicine thanks to the management of the projects "The words of breath 2015-2016" and "SOUND".She presented the results of her research at the international congresses ICAR 2014, EHA 2014, EADV 2015 and ERS 2016 and 2017. In addition to having participated in the writing of the book "Storie Luminose" published by the Sole 24 ore Cultura, she is author of numerous scientific publications.

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