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La medicina narrativa digitale nella cura del diabete di tipo I e dell’obesità: un progetto pilota dell’Ospedale Santa Maria di Terni

Le tecnologie digitali possono migliorare la sostenibilità del sistema sanitario, migliorando la qualità delle cure, perché valorizzano il capitale umano, sia dei curanti che dei pazienti.

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Questo è uno degli stimoli più importanti emersi dal convegno “Medicina Narrativa e tecnologie digitali”, organizzato dall’Azienda ospedaliera Santa Maria di Terni e da OMNI (Osservatorio di Medicina Narrativa Italia), Fondazione ADI e Regione Umbria, con il patrocinio dell’Istituto Superiore di Sanità.

L’Ospedale Santa Maria è diventato un punto di riferimento in Italia nell’esplorazione delle potenzialità delle nuove tecnologie. Tra le prime strutture sanitarie a utilizzare e misurare l’efficacia della telemedicina con i pazienti diabetici, l’ospedale ha ora avviato il primo progetto in Italia di medicina narrativa digitale per la cura del diabete di tipo I e dell’obesità.

Il progetto è stato fortemente sostenuto dal direttore generale Maurizio Dal Maso e ha coinvolto Giuseppe Fatati, Direttore S.C. Diabetologia e Nutrizione Clinica e il suo team, coordinato dalla dottoressa Eva Mirri.

Dal Maso si interessa alle potenzialità della medicina narrativa da molti anni, mentre per Fatati e il suo team si è trattato della prima esperienza. Il progetto di Terni è un pilota replicabile in altre strutture e in altre aree e fa emergere alcuni aspetti fondamentali che riguardano non solo la medicina narrativa e la telemedicina, ma anche la vision manageriale e le sfide della sanità del futuro. Spesso si pensa che la difficoltà nell’introdurre questi percorsi siano legate all’alfabetizzazione digitale di una popolazione sempre più anziana o al poco tempo dei curanti. Come racconta invece in modo molto efficace Dal Maso, il primo ostacolo è: “un prevalere della imprecision medicine che ancora ragiona in termini di ‘un farmaco per una malattia’ e non ‘un farmaco per una specifica persona’”. In questa prospettiva la precision medicine non corrisponde solo all’insieme delle omiche, ma si àncora all’appropriatezza come parola chiave per coniugare sostenibilità economica e qualità delle cure per il singolo soggetto.

In un bell’articolo sul New York Times, lo scrittore Samuel Park racconta la sua esperienza con il cancro e ricorda: “It might be fair to say that after I became sick, I stopped thinking of myself as a person and began to think of myself in terms of statistics”. Non sono solo i medici a pensare in termini di numeri, popolazione e probabilità, è spesso anche il paziente che perde se stesso come centro. E’ ricorrente l’esperienza di pensare che sia meglio non raccontare al medico esperienze personali, dal proprio lavoro, ai propri interessi, come se la biografia potesse interferire con la capacità diagnostica del medico, una sorta di disturbo soggettivo rispetto ad un’analisi che si pensa debba essere solo oggettiva e asettica. Negli ospedali non si sterilizzano solo gli strumenti e gli spazi, si sterilizzano anche le persone, e, talvolta, con la loro stessa complicità. Le narrazioni possono servire a cambiare questo sguardo del medico sul paziente e del paziente su se stesso.

Come sottolinea Fatati, la medicina ‘omica’ è un presente in divenire, che in questo momento è di difficile inserimento nelle strutture sanitarie e ha anche dei nodi problematici irrisolti. Quello che è invece possibile fare da subito è una “personomica“, cioè una medicina centrata non solo “sulla” persona ma su “una” persona specifica. La medicina narrativa può essere uno degli strumenti per realizzarla. Secondo Fatati consente infatti di passare da una medicina basata sul dato glicemico a un percorso di cura partecipato.

Il primo passo della struttura di Fatati verso la “personomica” è stato quello di cambiare la struttura dell’ambulatorio, prevedendo un tavolo circolare, con tre schermi, in modo che tutti si sentissero alla pari nella condivisione delle informazioni sul computer, che in questo modo diventa uno strumento di condivisione e non di separazione.

Il secondo passo è stata l’introduzione di un progetto di telemedicina per i pazienti che non potevano arrivare facilmente in ospedale.

Il progetto di medicina narrativa digitale rappresenta la terza fase della personomica dell’Ospedale di Terni. L’uso della piattaforma dedicata DNM ha facilitato l’introduzione della medicina narrativa anche in un contesto in cui non era mai stata utilizzata prima.

Spesso la tecnologia viene considerata sinonimo di spersonalizzazione, serialità, relazione anonima e poco empatica. Al contrario, l’esperienza di Terni mostra come gli strumenti digitali possano facilitare l’ascolto empatico della storia del paziente e favorire la personalizzazione del percorso e la relazione medico-paziente.

Sono stati selezionati pazienti diabetici di tipo 1, che frequentano il centro da molti anni e i pazienti obesi incontrati per la prima volta. Ad oggi sono stati coinvolti 28 pazienti, 18 con diabete di tipo 1 e 10 con obesità, 20 pazienti hanno accettato di partecipare (12 su 18 nel diabete e 8 su 10 nell’obesità).

Fatati e Mirri raccontano nello specifico il contributo del progetto al miglioramento del percorso di cura. Racconta Fatati: “Per noi medici è più facile leggere una storia che non farsela raccontare. Ma non è solo questo. Abbiamo notato che il paziente quando scrive è molto più sincero, vive meno la soggezione della relazione con il medico e si esprime più liberamente”.

Per interpretare le storie, Fatati ha scelto di utilizzare il modello dell’analisi transazionale, mostrando come nella singola storia, la relazione medico-paziente, soprattutto al momento della diagnosi, abbia avuto un impatto decisivo sulla capacità e le modalità successive del paziente di accettare e gestire la propria malattia. Dalle storie emerge lo strutturarsi ad esempio di un rapporto medico-paziente come un rapporto tra un genitore e un bambino ribelle, che diventa un ostacolo al percorso di cura. Nello stesso tempo, il passaggio ad una relazione da adulto ad adulto non può essere raggiunto con modelli di riferimento standardizzati, ma richiede una personalizzazione della comunicazione, per la quale le storie sono essenziali.

La dottoressa Mirri sottolinea il valore aggiunto di un approccio di medicina narrativa digitale: “Soprattutto i diabetici, li conoscevo già tutti molto bene e ho un ottimo rapporto con loro. Però alcune cose che mi hanno scritto non me le avevano mai dette. Sono poi emerse parole che non avevano nulla a che fare con quella che è la gestione della malattia in termini di terapia insulinica. Pensavamo che le parole più presenti nei loro racconti potessero essere “siringa”, “insulina”, “stick”, “glicemia”. Invece non vogliono condividere con noi gli aspetti strettamente clinici ma soprattutto, le strategie per migliorare la loro vita quotidiana. Si parla spesso di inerzia terapeutica del paziente, ma mi sono resa conta che spesso questa inerzia sta più in noi medici. Il paziente non si spaventa di cambiare device o modalità se serve a migliorare la sua vita e su questo vuole confrontarsi, sulla sua vita, non solo sulla sua malattia”. La relazione narrativa, secondo la dottoressa Mirri non inizia e finisce, soprattutto nelle patologie croniche: “perché la cura non deve rispondere solo all’andamento della malattia, ma anche ai cambiamenti dei progetti di vita. Nelle patologie croniche non esiste una sola storia, raccontata una volta per tutte, come una volta per tutte è la diagnosi di diabete, esistono per ogni paziente tante storie che cambiano, si trasformano, si arricchiscono nel tempo e la cura deve adattarsi a questi cambiamenti”.

Le prospettive sono interessanti e facilmente estendibili in altri contesti: le storie possono creare valore in sanità per le persone, i curanti e l’organizzazione.

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