Istituto Zooprofilattico Sperimentale dell'Umbria e delle Marche "Togo Rosati"
The Narrative Record represents a completion of the Medical Record.
It contains a profile of data and information on the patient. It also represents a tool he may use in order to critically evaluate his state and consciously cooperate with the doctor in the care and treatments.
Library staff can intervene in this context to make the process of writing methodologically and organizationally sustainable.
The intervention of the librarian is desirable to facilitate the creation and use of this literature, since frequently medical and paramedical staff would not have time to manage it.
Relevant on a methodological level is the collaborative writing method adopted for the preparation of narrative records.
Today effective methodologies can be introduced to collaboratively realize a text, using a scientific publishing organization, and peer reviewed-like literature methods.
Today it is possible to activate advanced text processing modes, using simple systems such as microblogs or more complex ones such as crowdsourcing or citizen science platforms, for sharing and publishing texts.
Current research on the Narrative Record, carried out by different subjects, will certainly need to consider these advanced and easily available tools for experimentations on biomedical communication, in this field.
La cartella narrativa rappresenta un completamento della cartella clinica.
Essa contiene un profilo di dati ed informazioni sul malato, rappresenta anche uno strumento che egli possiede per valutare in modo critico il proprio stato e collaborare consapevolmente con il medico nell'azione di cura.
Il personale di biblioteca interviene per rendere sostenibile il processo di scrittura sul piano organizzativo.
L'intervento del documentalista bibliotecario è auspicabile per facilitare la creazione ed utilizzazione di questa letteratura che il personale medico e paramedico non avrebbe il tempo per gestire.
Rilevante sul piano metodologico è la modalità di collaborative writing adottata per la redazione delle cartelle narrative.
Possono essere utilizzate collaudate metodologie per realizzare collaborativamente un testo.
è oggi possibile attivare modalità di elaborazione testuale avanzate, tramite sistemi semplici come i microblogs o più complessi come piattaforme di crowdsourcing o citizen science, per la condivisione e pubblicazione dei testi.
L'attuale ricerca sulla Cartella Narrativa, condotta da soggetti diversi, dovrà certamente prendere in considerazione questi strumenti avanzati e facilmente disponibili per le sperimentazioni sulla comunicazione biomedica in questo campo.
Dealing with patient modeling by a veterinary library particularly concerned with animal welfare, environmental quality and food safety, may seem at first a kind of interference between health institutions working on different fields: the humans and animal ones.
However, the Library 2.0 as an incubator of stories and narration as a useful descriptor at the biomedical level, have been dealt with several times by the Zooprophylactic Institution Library on this journal.
The central issue addressed here is the organization necessary for writing and managing narratives, in this case not of "generic users" of information services , but patients.
The stories that define the patient modeling, through the Narrative Medical Records are written firstly (in first person) by the interested person with the help of librarians, publishers and reviewers (as happen in any scientific publishing house).
This narration constitutes a repository of significant data for the doctor and the patient, promoting greater awareness towards one's own health and the treatment process itself.
This is also due to the sharing of experiences with health personnel, other patients and their families, that this literature entails
Incidentally. This is not ghost writing at all. The intervention of the library staff is substantially neutral. Solely aimed at making the writing process sustainable in terms of organization and costs.
This function, which we could define as supporting shared storytelling, is a crucial point for the construction of a "Narrative Medical Record", that is capable of "telling the patient".
The intervention of the librarian is also desirable because there is an objective difficulty for medical and paramedical staff in setting up an interaction with the patient regarding the writing and sharing of narrations.
Indeed, all this has a high "cost" in terms of time and requires specific skills.
The network of communicative relationships between physicians, patients and librarians is shown in Figure 1. It outlines an interdisciplinary context in which a Library Narrative Team
comes to life, for the information of patients, consumers, and their associations.
Figure 1. Network of relationships in the narrative space of the biomedical library.
The network explains the relationship between doctor (veterinarian), patient and
librarian for the take-over and literature carrying out
by Sanità Pubblica Veterinaria: Numero 57, Dicembre 2009
This topic was addressed by the Experimental Zooprophylactic Institute Library on a methodological level, thank to experiences carried out in collaboration with libraries of:
Regina Elena Hospital - Hospitaller Physiotherapeutic Institutes, Bambino Gesù Pediatric Hospital, Higher Institute of Health, ranking among the research activities (Cercato, 2009; Fruttini 2009; Cenci, 2016, 2018; Ciappelloni, 2009, 2010; 2011; 2017).
Narrative Medical Record & Crowdsourcing
A Narrative-Based Medicine naturally integrates with that based on evidence of efficacy (Evidence Based). The ideal place for this interaction is the narrative record, which completes the clinical one in the profiling of the patient.
Thanks to it, some aspects may emerge that would hardly appear in a clinical examination.
Thus, thanks to the patient stories, an editorial process based on peer reviewed methods (scientific literature), gives rise to specific documentation (Cenci, 2016) that can sustain or guide the treatment path.
Such a work is made possible by the presence of subjects who mediate a "writing relationship" by interposing between patient and doctor, leaving the latter the interpretation of this report that increases the "... the ability to acknowledge, absorb, interpret, and act on the stories and plights of others
"(Charon R., 2001).
Thanks to adequate structures, such as libraries, scientific literary circles, reading groups and journal clubs, and thanks to the use of the Internet through personal devices such as: palmtop tablets, phablets and smartphones available for patients and doctors, it is now possible to promote projects that address these issues in depth.
The collaborative writing method adopted for the drafting of the Narrative Medical Records is relevant on a methodological level.
In this regard, proven methodologies can be used to collaboratively create a text (Ciappelloni 2005), on a voluntary basis or invitation. It should be noted that these systems may involve other subjects as well (friends, relatives of patients, other patients).
It is about making use of a "collective intelligence" that brings itself at the service of a medical staff using simple systems such as microblogs (for example Telegram© Applications, or Whatsapp©).
There are also others more structured tools for crowdsourcing or citizen science such as: Zooniverse
, Amazon Mechanical Turk©
or social like systems, for sharing and publishing monographs.
Medical Narrative Records is an open project and can represent a turning point for the Health System Libraries to give new life to the relationship between managers and users of biomedical information. Of course, there can be no interference by third parties in the decision and management of therapies and in the relationship between doctor and patient
However, the librarian can play a significant role in this context, acting as an editorial and scientific mediator in two ways:
- Firstly by supporting the writing process with advanced methodologies. For example, in the case of the elaboration of narrative in open communities of authors and reviewers, it is possible to refer to acquired experiences such as "computer supported collaborative writing", following the criteria of the ordinary scientific publishing.
- Providing assistance in the selection of documentary sources. This aspect is particularly useful when the patient itself intends to autonomously access information from the Net.
He will need to be directed to controlled sources (such as Pubmed Central and Medline Plus), facilitating the access to texts also at the linguistic level.
Do not forget that in addition to this, the librarian documentalist will facilitate access to updated peer reviewed literature for the doctor, providing information on scientific databases and access to Document Delivery service.
The Library space, despite the frequent lack of technical equipment and personnel, is the place of choice for this interaction in order to support, in a neutral way, the creation and writing of narrative records and derived literatures.
Modeling patients with these methods, while an ancillary component of other more orthodox medical approaches, it is nevertheless a considerable tool in the hands of a physician, to realize cure treatments based on the "centrality of the patient" (Cercato, 2018).
Below slides and communication on the Medical Narrative Records, presented at the 42th AISD Congress in Rome (6-8 June 2019).
Cenci C. (2016). Narrative medicine and the personalisation of treatment for elderly patients. European Journal of Internal Medicine, 32, July 2016, pp. 22-25.
Cenci C. (2018). Medicina narrativa, tecnologie digitali e personalizzazione del percorso del paziente anziano. Editore Franco Angeli, Roma.
Cercato M. C. (2018). Medicina narrativa in oncologia: dalla narrazione libera alla cartella digitale narrativa. Recenti Progressi in Medicina; 109(6):324-327.
Cercato M. C., Ciappelloni R., Cognetti G., Fruttini L., Loreti A., (2009). Medscripta: the library as physical and virtual space for narrative medicine, creative writing, lectures, promoting the patients' nutritional wellness and health - Medscripta: la biblioteca come spazio fisico e virtuale di medicina narrativa, scrittura creativa, letture ad alta voce per il benessere alimentare e la salute del paziente
. Sanità Pubblica Veterinaria, n. 54, Giugno, http://indice.spvet.it#424
Charon R. (2001). Narrative Medicine. A Model for Empathy, Reflection, Profession, and Trust. JAMA. 2001;286(15):1897-1902. doi:10.1001/jama.286.15.1897
Ciappelloni R. (2017). Prefazione in: "Raccontami di Te. Il Quaderno dei Racconti 2015 di pazienti, familiari e operatori sanitari". A cura di Maria Cecilia Cercato, Isabella Bertazzi, Gaetana Cognetti, Elvira Colella, Alessandra Fabi, Virginia Scarinci, Francesca Servoli. Istituto Nazionale Tumori Regina Elena. Editore Istituti Fisioterapici Ospitalieri. II Incontro. La narrazione alla base della conoscenza: applicazione nella pratica clinica in Oncologia. Roma Centro Congressi Multimediale IFO, 31 Maggio 2017. https://www.ifo.it/wp-content/uploads/2019/10/Quaderno-RaccontamidiTe-2015.pdf
Ciappelloni R., (2009). Narrative approach in the bioscience, usefulto scientists, physicians and patients - L'approccio narrativo nelle bioscienze, utile per ricercatori, medici e pazienti
. Sanità Pubblica Veterinaria, n. 54, Giugno, http://indice.spvet.it#430
Ciappelloni R., Cognetti G., Loreti A., Fruttini L., Cercato M. C. (2010). Il bambino dal piede gigante. In: Il Volo di Pègaso. Raccontare le malattie rare: parole e immagini "Oltre l'ignoto", a cura di Domenica Taruscio, Stefania Razeto e Paola De Castro. Ed. Istituto Superiore di Sanità. http://old.iss.it/binary/pega/cont/Pegaso2_pubblicazione.pdf
Ciappelloni R., Fruttini L., Loreti A., Cognetti G., Cercato M. C. (2011). Narrative Medicine ad alta voce: Equipe narrativa di Biblioteca per l'informazione di consumatori e associazioni dei malati. III Convegno nazionale "Medicina Narrativa e malattie rare" - Roma, Istituto Superiore di Sanità, 13 Giugno 2011. Sanità Pubblica Veterinaria n. 67. http://www.spvet.it/arretrati/numero-67/documenti/PosterMalattieRare-ROMA2011.pdf
Ciappelloni R., FruttinI L., Penocchio G. (2005). Computer supported collaborative writing nelle discipline biomediche. Rivista Il Chirone. 2 21 - 26
Fruttini L., Cognetti G., Loreti A., Cercato M. C., Ciappelloni R. (2009). Narrative and Library space in biomedical Iiterature: issuing a Manifesto - Lo spazio narrativo e quello della Biblioteca per la letteratura biomedica: pubblicazione di un manifesto
. Sanità Pubblica Veterinaria: Numero 57, Dicembre 2009
Magini G., Santoni V. (2007). Manuale di Scrittura Industriale Collettiva. Come si scrive un libro SIC. http://www.scritturacollettiva.org/files/ManualeSIC_0.pdf
Perrini R. (2002). Pianeta scuola. Dalla A come apprendimento alla V come valutazione. Editore Armando, Roma.
Ciappelloni, 2019 - Patient Modeling: The collaborative narrative in the Library Spacee (SPVet.it 117/2019)