1,720,992 research outputs found
Pratiche sanitarie invisibili e innovazione dei sistemi regionali di cura: la cartella clinica del cittadino
No full textL’attenzione per la qualità della vita e per il mantenimento degli equilibri di salute spinge
le società occidentali ad investire quote crescenti di risorse e di conoscenza per lo sviluppo
dei sistemi di cura. Allo stesso tempo i cambiamenti demografici in atto stanno mettendo a serio
rischio la sostenibilità di questi sistemi.
Il paper si propone di riflettere su questi nuovi assetti grazie all’analisi di una sperimentazione
tutt’ora in corso di uno degli strumenti che caratterizzano la fase attuale, una cartella
sanitaria da utilizzare via Internet. E’ uno strumento che dal punto di vista del design è riconducibile
a quelli che in letteratura sono comunemente chiamati Personal Health Record
(PHR), sistemi elettronici affidati direttamente ai pazienti che ne hanno il pieno controllo sia
per l’accesso che per la gestione e condivisione dei documenti sanitari in formato elettronico a
partire da quelli inviati in automatico dai laboratori di analisi pubblici.
Dopo aver presentato la metodologia con cui si è accompagnata la fase di design di questo
sistema, si cercherà di seguire alcuni percorsi di analisi per comprendere come questa esperienza
fornisca chiavi di lettura per comprendere le trasformazioni in atto in campo infrastrutturale.
La discussione dei risultati si concentrerà sulle pratiche progettuali che questo nuovo
sistema informativo richiede ai referenti; sulle pratiche di acquisizione e gestione di uno spazio
di accesso alla comunità delle infrastrutture mediche; infine sulle pratiche di ri-definizione
delle proposte progettuali dentro un lavoro di “congiunzione” tra sistemi di salute e benessere
dei soggetti
Enrolling citizens through technology. Laypeople as "junction workers" in new health care infrastructures
No full textAmong the many transformation in healthcare systems a particular role is played by technological innovation. While often considered as results of larger scale decisions, technologies do reshape social roles and redistribute responsibilities among the networks they are part of. The study of the making of health-related technologies, though, can provide a thought-provoking perspective on the healthcare sector and its policies.
Here we present a reflection on the growing role of laypeople in their own care by the analysis of the process of design and prototyping of a new ICT, the Personal Health Record (PHR). According to Medical Informatics, PHR is a web-based technology that will allow everyone to manage, share and access medical records, designed to give laypeople a tool to create and keep active a personal network of formal/informal caregivers but also an instrument to help creating a new doctor-patient relation.
As part of a interdisciplinary team (computer scientists, mathematicians, sociologists) we conducted a preliminary study to identify the health-related needs of ordinary citizens so to create a Personal Health Record (PHR) to be implemented at a regional scale (500.000 people roughly) in northern Italy.
We elicited medical narratives, revolving around the existing health records, to study how people manage their health in their households. We conducted 50 in-depth interviews focusing on a) how people manage their medical information at home, looking for existing strategies to be considered as guidelines in the PHR design and b) how the records are used to build shared account between patients and doctors.
We argue that the rhetoric of patient empowerment underemphasizes the new role and the consequent responsibility of patients/citizens who are progressively charged with the burden of being constantly accountable to healthcare professionals. In this respect, the PHR can be considered as a patient-activated infrastructure which has to be kept working for the healthcare provision to be delivered.
In this paper we reflect on the implication of designing and implementing such a technology with particular attention to the power and responsibility issues tied to it
Building health infrastructures relying on laypeople (?). Prototyping a Personal Health Record
No full textThe crisis of western health care sector is strongly influenced by the reduction of professional caregivers and the increasing costs needed to manage complex institutions such as modern hospitals. Among the many solutions proposed to overcome these problems, two seem to be widely adopted. On the one hand, health organizations have become a privileged locus of technological innovation and ICT’s have been extensively implemented to enhance intra/extra organizational coordination. On the other hand, patients (and their families) are asked to carry a growing burden of health-related activities in order to supplement the formal caregivers, taking part in caring for themselves (i.e. self monitoring, self care).
In this paper we discuss the rise of the Personal Health Record (PHR), a yet-to-be-implemented technology that appears to support both patients’ involvement and ICT’s use. PHR is an electronic application through which individuals can access, manage and share their health information. A PHR could be a repository of personal health information (allergies, list of medications, tests) and a part of doctor-patient relation allowing doctors to retrieve data (e.g., disease history) and to write notes or prescriptions on it. In a broader perspective, PHR is seen as a patient-centered information hub, allowing on line access to health care system (e.g., lab tests) but also personal data entry (i.e. glucose level, blood pressure, weight) or even a biological will.
While often presented as an electronic tool to empower laypeople, PHR can also be considered as a workaround to solve the problem of information exchange among the many different and (usually) not interconnected electronic records used by clinicians. From this standpoint any single user of a PHR can be considered as the ‘maker’ of a junction of a much broader health infrastructure, bridging the gaps between the existing systems. This infrastructure, though, would rely on laypeople, as it would ‘be activated’ only by their actions. In this respect, to design a viable technology, it is to be understood how and why laypeople would be willing to use such a system.
A preliminary study was conducted to identify the health-related needs of ordinary citizens so to create a PHR to be implemented at a regional scale (500.000 people roughly) in northern Italy. 50 in-depth interviews revolving around health management in the household were conducted to understand a) how people manage their paper medical record and b) how the records are used to build shared account between patients and doctors.
The analysis show that people, even the non-ill, are implicitly asked by the healthcare system to carry on some tasks to keep the service provision running smoothly. This work, unrecognized as such, is mainly the information management needed to keep all doctors on the same page and the coordination work needed to make doctors job easier. The analysis of the health record keeping patterns led us to identify three different strategies: ‘minimalistic practices’ – when there is a simple unstructured record repository-; ‘erratic practices’ – when health issues require a highly tailored constant rearrangement of data to sustain the medical interventions; ‘network practices’ – when the health problems of an individual are managed by an ad hoc constituted network of caregivers
Le pratiche di gestione personale dei dati sanitari tra cognizione ed emozione
No full textQuando si affrontano degli stati di malattia e si accede più volte ai servizi sanitari, non ci curiamo del fatto che i referti prodotti potranno un giorno essere trasformati in supporti digitali. Comunemente le pratiche dell’archiviare, selezionare e trasferire i documenti tra i vari professionisti sanitari potrebbero in effetti prestarsi a questo obiettivo, ma a ben guardare, come suggeriscono gli esperti di costruzione di sistemi informatici più attenti, anche un banale documento medico risalente a qualche anno fa è capace di riportare in superficie emozioni, vissuti, sentimenti di sofferenza o di scampato pericolo che è opportuno considerare.
In questo lavoro, sulla scorta di una ricerca empirica di stampo qualitativo, ci proponiamo di riflettere sull’intreccio tra le dimensioni cognitive, emozionali e funzionali a partire dall’osservazione delle pratiche in uso per la conservazione dei propri documenti sanitari.
Una adeguata progettazione dei sistemi informativi deve, infatti, saper trarre dalle pratiche cognitive una consapevolezza della complessità di questi “documenti” e una capacità di ascoltare e leggere le dimensioni immateriali che questi documenti portano con se
Al “gran ballo” delle ICT in ambito sanitario: la presentazione del sistema PHR
Full text linkIl paper affronta nello specifico il processo di presentazione di una innovazione ICT, applicata al sistema sanitario, che mette i pazienti al centro di un nuovo dispositivo di archiviazione e gestione dei dati sanitari. Un sistema che in letteratura viene definito Personal Health Record (PHR).
La PHR si presenta come una innovazione tecnologica che ridefinisce il ruolo del cittadino nei confronti del sistema sanitario tradizionale. Il cittadino, infatti, non viene più considerato qui come l’oggetto descritto nei documenti scambiati tra medici, quanto piuttosto l’attore maggiormente interessato al fluire delle proprie informazioni sanitarie nella rete dei curanti, al fine di assicurarsi la migliore assistenza possibile.
L’attività di campo, durata circa due anni, ha permesso di ricostruire e analizzare la transizione che ha visto questa tecnologia passare dall’enunciazione iniziale alla concretezza tangibile della sperimentazione. Attraverso la metafora del “presentarsi in società”, vicenda tipica dei ricevimenti e dei balli organizzati dai ceti nobili nell’epoca moderna, si cerca di riflettere su come i sistemi ICT di nuova concezione affrontino l’arena eterogenea dei sistemi informativi residenti e si intersechino con altri sistemi preesistenti dotati di specifiche “capacità” politich
Emotions and Personal Health Information Management: some Implications for Design
Full text linkThis work reflects on the translation of a paper-based information system into an electronic one, taking account of the emotional dimension of material artifacts. A qualitative analysis carried out through semi-structured interviews enabled us to describe laypeople’s healthcare practices, and specifically the use of "pediatric booklets”, which are paper health diaries designed to provide parents with a repository of the most relevant clinical data about their children. Our analysis reveals that parents’ use of the booklet does not depend only on the clinical relevance of the information contained in it. Its success rather depends on
practices that reshape the booklet’s original meaning. In particular, parents use booklets as containers for other clinical records, and they consider them more as objects of affection and symbols of their caring for their children than as clinical tools with instrumental value in themselves. In the discussion we consider the risks of dematerializing health information tools by underestimating the relevance of the emotional sid
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