E-health e Engagement: il futuro prossimo della sanità
Elefanti che seguono faticosamente gazzelle in corsa: questa l’immagine scelta dall’Osservatorio Innovazione Digitale in Sanità del Politecnico di Milano per fotografare lo stato di avanzamento della salute digitale in Italia.
L’infografica “La Sanità alla rincorsa del cittadino digitale” racconta investimenti nella digitalizzazione che diminuiscono e cittadini e medici che usano o vorrebbero sempre di più utilizzare servizi digitali per raccogliere informazioni, utilizzare prestazioni, costruire relazioni. Secondo i dati dell’Osservatorio, il 52% dei cittadini ha utilizzato nel 2016 almeno un servizio online, il 42% degli internisti e il 53% dei MMG utilizzano WhatsApp per comunicare con i pazienti. Mentre non decollano teleassistenza e teleriabilitazione.
E’ un digitale “fai da te”, che rischia di non produrre innovazione rilevante e di tradursi in lavoro aggiuntivo non riconosciuto per gli operatori sanitari.
Perché le tecnologie digitali portino a un miglioramento della qualità e della sostenibilità della cura, occorre un quadro di riferimento che non si àncora a piattaforme specifiche, ma a un nuovo modello diagnostico-terapeutico, caratterizzato in primo luogo dall’Engagement di tutti gli attori che ruotano intorno alla cura. Engagement è una parola-chiave da tempo utilizzata dalle associazioni dei pazienti, che ha però acquisito una nuova vitalità recente nella letteratura scientifica internazionale.
Per questo, Claudio Bosio e Guendalina Graffigna dell’Università Cattolica, in collaborazione con la Direzione generale Welfare della Regione Lombardia e con la supervisione metodologica dell’Istituto Superiore di Sanità, hanno promosso per la prima volta a livello internazionale una Conferenza di Consenso , per definire meglio cosa intendere e raccomandare come Patient Engagement, in particolare nell’ambito della cronicità.
Nelle Raccomandazioni, presentate il 13 giugno, emerge un approccio che candida l’Engagement a diventare la parola simbolo di una nuova cultura della cura, abilitata dalle tecnologie digitali. Nelle conclusioni viene infatti chiarito che: “E’ coerente adottare la dicitura di Engagement senza specifica qualifica dell’attore (patient) al fine di sottolinearne la natura relazionale-sistemica”. E si riconosce il ruolo chiave delle tecnologie: “Le tecnologie possono essere considerate come abilitanti il processo di Engagement ed integrative ad altre strategie di intervento non tecnologiche. L’intervento tecnologico è a supporto dell’Engagement, non sostitutivo della relazione tra la persona e il suo team assistenziale”.
L’Engagement, facilitato dalle possibilità offerte dalle tecnologie digitali non mette il paziente, ma la rete e le relazioni al centro. Il coinvolgimento attivo non è più solo del paziente, ma anche del caregiver informale e dei professionisti sanitari, che troppo spesso si auto-percepiscono come ingranaggi di un sistema e non membri attivi di un percorso.
Lo slogan “il paziente al centro” rischia infatti di essere fuorviante: rievoca e si associa a “il cliente al centro”, facendoci pensare che ci sia un solo soggetto da soddisfare. Il rituale dell’atto terapeutico contemporaneo fonda invece la sua efficacia sulla co-costruzione della storia di cura, sulla valorizzazione delle conoscenze, dei vissuti, delle aspettative di tutti gli attori coinvolti. Siamo abituati ad attribuire “il sapere” al medico e “il bisogno” al paziente. In realtà, pur nelle differenze fondamentali di ruoli e conoscenze, anche il paziente è portatore di un sapere importante, così come il medico è portatore di aspettative ed esigenze. Il curante non è un erogatore di servizi a un cliente, è un potenziale mediatore di vita e di morte, è a contatto con materiale emotivo incandescente e il suo benessere, i suoi bisogni sono fondamentali per il successo di un percorso di cura, tanto quanto quelli del paziente.
L’Engagement come parola chiave di attivazione della rete aiuta anche a sganciarsi da un percorso terapeutico pensato come una relazione a due: medico-paziente. Al contrario, una molteplicità di attori diversi concorrono al successo e, troppo spesso, rischiano di non parlarsi o non vedersi reciprocamente. Nei mesi scorsi ho incontrato virtualmente un gruppo di ingegnere biomediche, We Women Engineers, con cui ho avviato un’interessante conversazione sulla medicina narrativa.
Come scrivono Manuela Appendino e Giusi Di Salvio:
“Se la Medicina Narrativa nasce per avvicinare le due facce di una medaglia: paziente-medico, dall’altra si innesca l’esigenza di trovare un punto sinergico sul quale poter dialogare tutti insieme indistintamente, pazienti, clinici e perché no, anche gli ingegneri biomedici. Troppo spesso l’approccio tecnico-scientifico trascura la comunicazione intesa come apertura all’emozione, al feeling che si può creare all’interno di un team di sala operatoria. Sebbene essere tecnicamente preparati sia una condizione sufficiente, noi WWEvvini pensiamo che il dialogo sia ancora carente e che si debbano attivare iniziative che possano aprire gli orizzonti di ciascuno”. continua a leggere
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