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Narrative medicine and clinical studies: interview with the Janssen team involved in the DIAMANTE study

DIAMANTE is an observational study by Janssen-Cilag SpA, addressed at HIV-1 positive patients whose operation was commissioned by Fullcro SpA with the collaboration of the Health and Health Area of Fondazione ISTUD. For the first time, a clinical study involves the integration of Quality of Life questionnaires with a narrative survey on the experience of the disease. 

In January 2019, we conducted a first interview with the Janssen team involved in the DIAMANTE study on the integration of narrative medicine within a clinical study. Today, we host a second interview with Alessia Uglietti, Medical Affair Manager Infectious Disease & Vaccines, Roberta Termini, Therapeutic Area Medical Manager Infectious Disease & Vaccines, Daniela Mancusi, Medical Science Liason Manager, and Marianna Portaro, Medical Affairs Associate Infectious Disease & Vaccines, to understand how this innovative experience is proceeding. 

D. A year and a half after our first interview, how do you consider this experience of integrating narrative into a clinical study?

AU. Integrating narrative medicine in a clinical study helped us to point out significant aspects, regarding the condition, the doctor-patient relationship and above all, the patient’s perspective.

RT. Indeed, it has been a positive experience. It has led us to include narrative medicine also in observational studies dedicated to other conditions, such as Pulmonary Arterial Hypertension, where we expect patients to be responsive to narrate their experience.

DM. Narrative Medicine is undoubtedly an added value and represents the differentiating factor of the DIAMOND study, compared to other ones in which the “classic” questionnaires of Patients Reported Outcomes are collected. Narratives are much more representative of the patients’ experience than questionnaires. The scientific community dealing with HIV is increasingly looking at patient centrality and awareness, so using these tools follows the same direction.

D. Are you receiving any feedback from your staff and clinicians involved, and if so, what kind?

AU. We heard that one patient appreciated narrative medicine so much that asked contacts to write a heartfelt thank you. Also, the doctors of the same patient believed in narrative medicine, committing themselves to always involving patients and discovering interesting information to complete the visit.

RT. The feedback is generally very positive also from the doctors who were initially a bit worried about the patients’ reactions to the request to narrate their experiences. Acceptance at national congresses has also been positive, demonstrating the interest that the topic can generate.

DM. Yes, we are getting excellent feedback, both from clinicians and patients. As for the clinicians, even those who were initially more sceptical admitted that they were impressed by their patients’ narratives, and this led them to reflect on aspects they took for granted. We are proud of the approval we received from some of the clinicians who were not participating in the study, who are happy to discuss the data we published last year in both national and European contexts. Such a great recognition! Patients pleasantly accepted narrative medicine: at the first visit, about 2/3 of the patients in the study wanted to share their experiences of living with HIV, often very touching.

MP. We received many feedbacks: by clinicians, who tell us about the positive experience they are living with narrative medicine, a new opportunity to listen to that goes towards treating the patient and not only of the disease; by the patients who feel wholly looked after, they are touched when they ask to thank us for having allowed them to narrate and, in a certain sense, to listen to themselves. After all, it is no mystery that writing has a “therapeutic effect”.

D. Based on your experience, compared to “traditional” observational studies, what kind of opportunities have been created by employing narrative?

AU. They add value to the study by providing a global view of the patient/illness and patient/medical relationship.

RT. is a useful additional tool to the validated QoL questionnaires also from an interpretative point of view.

DM. Undoubtedly, this experience has created a moment of reflection and led clinicians to question their relationship with patients. Employing these tools (both narrative and questionnaires) in clinical practice outside of a study remains challenging. Both the administration and the analysis of questionnaires or narratives require time and effort, and this is still a critical issue.

MP. The integration of narrative medicine has allowed combining the observation of the patient’s clinical progress with the more subjective aspects that otherwise would be neglected, e.g. the burden of social stigma in accepting the condition. Although not measurable in a “conventional” way, these aspects add significant elements to the interpretation of the patient’s wellbeing, thus assuming a complementary aspect to the clinic.

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Degree in Political Science, Master in Health Management at SDA Bocconi in Milan. He developed research project, training and consultancy in healthcare organizations. He is professor of organization and health politics. In recent years he focused his interest on sustainability and personalization of care through the narrative approach. He has authored various project research, articles and essays on these topics. He is Director of the Health Area of the ISTUD Foundation, member of the Board of the Italian Society of Narrative Medicine.

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