Cristina Cenci is an anthropologist and author of the blog Digital Health on Nòva – SOLE24ORE. She deals with health anthropology and created the Center for Digital Health Humanities, with the aim of supporting the digital world with the perspective and practices of medical humanities. He created DNM, the first digital platform for the application of narrative medicine in clinical practice. He is a founding member of OMNI – Observatory of Narrative Medicine Italy.
Digital narrative medicine is a narrative telemonitoring pathway based on the methodologies of narrative medicine and aimed at listening, understanding and integrating the narrative of the patient and caregivers, for the personalisation of the care pathway. It complements the telemonitoring of clinical parameters and makes it possible to detect the psycho-social impact of the disease and therapies and to integrate the care plan with the patient’s existential project.
Compared to digital storytelling, digital narrative medicine is a pathway that takes place within a care relationship and requires dedicated IT systems. Generalist communication platforms or social media, which do not guarantee an appropriate setting and adequate protection of health data, cannot be used.
In 2016, I launched DnmLab (http://digitalnarrativemedicine.com/) in Italy, the first digital platform designed specifically for the application of narrative medicine in clinical practice. The use of the tool has been validated in a series of studies in oncology (solid tumours and rare cancers) and epilepsy. Patients and caregivers are invited to tell the story by the care team.
The patient can narrate freely, if that is the need. However, the platform offers its added value when using the advanced functionalities, which allow setting up lists of narrative stimuli designed for specific therapeutic goals. In summary, the flow involves the caregiver inviting the patient to write his or her story through a stimulus-driven narrative diary. Narrative stimulus lists can be shared with other centres and caregivers, thus contributing to the definition of common tools for the application of digital narrative medicine in different therapeutic areas.
The patient accesses the platform from a computer or mobile and writes the story following the stimuli, which may occur all at once, or progressively, according to a pre-established schedule.
The patient may decide to ignore some stimuli and supplement the narrative with free observations, independent of the proposed stimuli.
The patient may write but also record the story or include videos and images.
If the patient authorises it, the caregiver can share the history with other caregivers directly through the platform, exchanging notes and messages with the team. These notes are not seen by the patient. The caregiver can decide whether to discuss his or her story with the patient in scheduled face-to-face meetings or to interact with the patient through the platform offering a messaging and video chat service. It is also possible to involve groups of patients in a guided storytelling process. The standardisation of the story acquisition setting and the possibility of exporting the anonymised text corpus allow for contributions to narrative-based qualitative research projects.
From the studies on digital narrative medicine, recurring strengths and weaknesses emerge. The assessment of the caregivers is positive. In particular, it emerges that through the analysis of the patients’ narratives, it is possible to gain insights not otherwise detectable and a better personalisation of the relationship and care. The general assessment of the patients was also positive. They are able to reflect better on themselves, bringing out and communicating relevant information to the doctor that otherwise would not have been taken into account. The digital tool is considered easy to use, clear to understand and is perceived as safe. Even patients with poor digital skills or in old age manage to use the tool when motivated to share their narrative. Digital narrative medicine does not lengthen the visit time and improves doctor-patient communication.
The areas of weakness are mainly associated with cultural, organisational and relational continuity dimensions. For patients it is indeed essential to obtain feedback to their narrative from the care team, which, on the other hand, does not always participate in a unified and coherent way in the pathway. For the caregivers, once the pilot phase is over, it is sometimes difficult to integrate the methodology into the framework of the care pathways, because of the inertia to change of the structures they belong to or because of organisational models that do not facilitate participatory medicine.
In this context, the current transformation of healthcare generated by the pandemic crisis may represent a significant opportunity. The integration of digital narrative medicine in telemedicine pathways can foster not only a technological but also a significant cultural change. On the one hand, narrative telemonitoring can mitigate the potential weakening of the doctor-patient relationship of traditional telemedicine and telemonitoring pathways, which focus exclusively on clinical dimensions. On the other hand, the valorisation of the home as the first place of care and a better articulation between hospital and territory, may favour the affirmation of organisational models that allow a greater valorisation of narratives in multidisciplinary teams.
By integrating narrative telemonitoring, telemedicine could build the person-centred care setting that in presence has not yet succeeded in establishing. Simply replacing the visit with telemonitoring risks a major loss of information, relationships and therapeutic power. Replacing the current low person-centred pathways (patients and carers) with personalised and narrative pathways enabled by technology is, on the contrary, a challenge that can be successfully met.