1,720,995 research outputs found
Il cittadino conteso: retoriche di sistema e sguardi sulla quotidianità dell’informazione sanitaria
No full textPrendersi cura della salute personale: aspetti tecnologici e lavoro “oscuro” dei pazienti
No full textIl lavoro che si intende presentare riguarda una riflessione sul ruolo crescente dei cittadini nella
gestione della loro salute e dei dati ad essa riferiti con particolare riferimento alle tecnologie PHR
(Personal Health Record) consentite dai recenti sviluppi delle ICT (Information and Communication
Technology).
Gli strumenti PHR definiscono una tecnologia software basata su web che permette a tutti di gestire,
condividere e accedere alla propria documentazione medica. Attraverso le opportunità di condivisione
dei dati con il personale sanitario e i propri network parentali, è possibile creare e mantenere attiva una
rete formale / informale di soggetti che concorrono al sostegno del proprio equilibrio di salute. Allo
stesso tempo questa tecnologia di dominio prevalente dei cittadini permette di ripensare la relazione
medico -paziente.
Abbiamo condotto uno studio preliminare per individuare le pratiche quotidiane e le esigenze in
materia di salute dei cittadini in modo da progettare una PHR, da applicare su scala regionale in una
provincia del Nord-Italia.
Abbiamo realizzato interviste a domicilio cui è stata associata una osservazione di tipo etnografico per
identificare le pratiche (oscure) che i pazienti mettono in pratica per facilitare il lavoro degli operatori
sanitari. Abbiamo suscitato racconti di percorsi medici e di terapie affrontate per comprendere le
principali tipologie di conservazione e interrogazione dei dati sanitari prodotti nel tempo e archiviati
presso il proprio domicilio. Sono state così raccolte informazioni molto utili per studiare come le
persone gestiscono la loro salute.
Sono state raccolte 50 interviste in profondità su: persone che avevano in carico soggetti “dotate” di
particolari libretti sanitari (pediatrico, diabetico, ecc.); persone che avevano avuto particolari
complessità mediche da affrontare (patologie oncologiche); persone che non avevano particolari
incidenze patologiche. A tutti è stato chiesto di rendicontare la relazione ‘paziente-informazionipersonale
sanitario’.
L'analisi mostra che le persone, anche non malate, debbono implicitamente rispondere alle
sollecitazioni del sistema sanitario e svolgere alcuni compiti per garantire la possibilità di ricevere
prestazioni sanitarie. Questo lavoro dei cittadini, non è riconosciuto come tale, rimane in ombra, è
oscuro (opaco), e tuttavia è un lavoro fondamentale per mantenere efficiente il contributo del personale
sanitario.
L'analisi cerca di individuare alcuni modelli tipici di conservazione dei documenti relativi alla salute e
ha portato ad identificare tre diverse strategie: a) il modello delle pratiche minimaliste; b) il modello
delle pratiche mutevoli; c) il modello delle pratiche di network.
Queste osservazioni presso il domicilio dei pazienti, corredate da relativa documentazione fotografica
è stata confrontata con la retorica dell’empowerment dei pazienti. Retorica che vuole ulteriormente
caricare di impegni i cittadini affinché il sistema sanitario possa esprimere al massimo la sua efficacia.
Inoltre questo lavoro ha permesso di avviare una relazione dialettica con gli sviluppatori del software in
modo da includere queste pratiche nel sistema al fine di semplificare la gestione delle informazioni e la
relazione con il sistema sanitario. Il lavoro pone forte interrogativi sulla tradizionale relazione univoca
tra sistema sanitario
The (opaque) work of being a patient: aligning citizens to health care system
No full textalth care systems are generally understood as organizations whose aim is to deliver a service to patients. This definition sets a sharp distinction: organizations provide service, patients receive it. Instead, we propose to consider patients as `opaque` members of the health care system, working (in an unaccounted fashion) for it. This framework emerged as the result of an ongoing project of design of a new technology, the Personal Health Record (PHR). A PHR is an “electronic application through which individual can access, manage and share their health information” (AA. VV, 2004), a substitute of paper records kept at home. There isn`t a list of what a PHR should do, but it`s agreed that it must be repository of personal informations (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). The public-funded project we`re working on aims at building and testing a PHR prototype, to be proposed for public use. As social researchers embedded in a ICT unit, our specific task has been (and still is) to reflect on the implications of a shift from paper to digital information for patients, doctor and health care system to provide information help building prototypes. Our positions, nonetheless, allowed us to conduct a broader exploration of the interactions among the multiple layers of society the artifact aims at bringing together. Our research follows two paths: the management of existing records and the materialization of the prototype. We consider the PHR as a `technology of accountability` (Suchman et al., 2002), an artifact aimed at building mutually intelligible path of actions between health care systems and patients. In this perspective the PHR is seen as a part of a complex socio-technical system (Berg, 1999) which comprises physicians` work practices, patients` archiving strategies (Moen and Flatley Brennan, 2005), hardware and software. We focused on the existing paper records to understand ? how people manage their medical information at home, looking for existing strategies to be considered as guidelines in the PHR design (semi-structured interviews, ethnography); ? how the paper records, as artifacts-in-use, are used to build shared account between patients and doctors (semi-structured interviews, shadowing), At the same time we explored reflexively our own research team work. We considered `the prototype` as a linguistic artifact (Czarniawska-Joerges and Joerges,1990), a non-material object in its coming into being. One of the authors conducted a participant observation recording the continuous `flowing in` of heterogeneous materials (research data, journal articles, internal meetings, political expectations, medical classifications, software and hardware issues) and their alignement into discursive and material practices (Barad, 1998). This led us to consider the PHR an actor in a already existing landscape of technologies, work practices, medical classification systems, political interests and, not least, market. The research has highlighted patients` efforts to interact with doctors: relevant medical data requires paperwork, softwares do not allow data exchange, managing medical information in the household is a time-consuming activity. Yet, all these actions are not considered `work` even if the health care system relies on them to perform their task. On the other hand, we have analysed our effort to `technologise accountability`, considering the way the row data of the research on paper records had to be aligned with other relevant socio -material artifacts (hardware; software interoperability; situated medical practices; political, ethical and legal issues) to build the prototype. We propose, then, to consider patient as an unaccounted `health care..
The (opaque) practices of taking care of personal health: empowering laypeople through technology?
No full textWe present a reflection on the growing role of laypeople in their own care through the analysis 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, 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. We conducted a preliminary study 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.
We elicited medical narratives, revolving around the existing health records kept at home, to study how people manage their health. We conducted 50 in-depth interviews focusing on a) how people manage their 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 (opaque), 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.
We argue that the rhetoric of patient empowerment underestimates the responsibility of patients/citizens, progressively charged with the burden of being constantly accountable to healthcare professionals.
We also argue that 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
How organizations learn to cross technologies boundaries: prototype tacit knowledge
No full textalth care systems are generally understood as organizations whose aim is to deliver a particular service to citizens and patients. This definition proposes a sharp distinction: organizations provide service, patients receive it. We challenge this view proposing a conceptual framework that considers patients as `opaque` and temporary members of the health care system, working (in an unaccounted fashion) for it. This framework emerged as the result of an ongoing project of design of a new technology, Personal Health Record (PHR). A PHR is an “electronic application through which individual can access, manage and share their health information” (AA. VV, 2004). a substitute of existing paper records kept at home. In the rhetoric `information technology society` the PHR is a step towards a more integrated world. There is not a single list of what a PHR should do, but it`s agreed that it must be repository of personal informations (allergies, list of medications, tests) and a part of doctor-patient relation allowing doctors to retrieve data from it (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 results). Our research considers the PHR as a `technology of accountability` (Suchman et al., 2002), an artifact aimed at building mutually intelligible path of actions between health care systems and patients. In this perspective the PHR is seen as a part of a complex socio-technical system (Berg, 1999) which comprises physicians` work practices, patients` archiving strategies (Moen and Flatley Brennan, 2005), hardware and software, laws and regulations (e.g., privacy), to give a short list. At the same time we consider PHR as a space of a critical transition where different organizations confront themselves as network with different practices and different meanings (Mol and Law 1994). So as a boundaries object PHR offer the opportunity to observe how organization learn from individuals and viceversa in order to understand which kind of potential conflict are latent. As sociologists embedded in a ICT research unit, our specific task has been (and still is) to reflect on the implications of a shift from paper to digital information for patients, doctor and health care system in order to provide information to help building prototypes. As prototypes are yet to be built we have focus on the existing paper records. In this first phase we`ve decided to focus on patients, considering them as our point of access to the health care system and specifically 1. how people collect their medical data (semi-structured interviews); 2. how people manage their (paper) medical information at home, looking for existing strategies to be considered as guidelines in the PHR design (semi-structured interviews, ethnography); 3. the paper records as artifacts-in-use in the building of a shared account between patients and doctors (semi-structured interviews, shadowing), 4. how meaning change their pertinence and relevance when across the boundaries (observations on interactions); The research has brought to the fore the efforts patients have to make in order to interact with doctors. Sometimes relevant medical data is kept by institutions that require a lot of paperwork, doctors use different information systems that do not allow data exchange, storing information in the household and retrieving it before a visit is a time-consuming activity: yet, all these actions are not considered `work`. Without these activities, though, the care could not be given as the health care system relies on them to perform their task. We propose then to consider patient as an unaccounted `health care system worker` whose task is to allow the system`s flexibility, providing some work needed to function. The opaqueness of these work appears to be one of its constitutive features. In this respect we could aspect the PHR t..
Disease or illness? Building and embedding medical classifications in software
No full textThe most basic classification issue in health care practices is the different ways lay peple and health care personnel oganize information. While patients represent their medical condition framing them in a narrative that underscores the disruption of their normal state (illness), physicians represent it in terms of their professional knowledge (disease). Disease model has been `embedded` in software packages EMRs (Electronic Medical Records), tools designed around physicians working practices to help them keeping track of the patient`s history. In the last years, though, there is a growing number of the initiatives to promote the use of Personal Health Records (PHRs), patient centered electronic tools aimed at helping citizens to classify, archive and retrive personal medical informations and to share them. In this paper we present a resarch on the building of a PHR, focusing on the classification issues. We consider the PHR as a `technology of accountability` (Suchman et al., 2002), an artifact aimed at building mutually intelligible path of actions between health care systems and patients. In this perspective the PHR is seen as a part of a complex socio-technical system (Berg, 1999) which comprises physicians` work practices, patients` archiving strategies (Moen and Flatley Brennan, 2005), hardware and software. We focused on the existing paper records to understand how people manage their medical information at home, looking for existing strategies to be considered as guidelines in the PHR design (semi-structured interviews, ethnography); how the paper records, as artifacts-in-use, are used to build shared account between patients and doctors (semi-structured interviews, shadowing) At the same time we explored reflexively our own work in order to bring to the fore the complex arrangements made by our research unit to `build` a classification system to be embedded in the technological artifact. One of the authors conducted a participant observation recording the continuous `flowing in` of heterogeneous materials (research data, journal articles, internal meetings, political expectations, medical classifications, software and hardware issues) and their alignement into discursive and material practices (Barad, 1998). Barad, K. (1998), Getting Real: Technoscientic Practices and the Materialization of Reality, in “Differences: A Journal of Feminist Cultural Studies”, 10, 2, pp. 88–128. Berg M. (1999), Patient care information systems and health care work: a sociotechnical approach, “International Journal of Medical Informatics”, 55, 2, 87–101. Moen A. and Flatley Brennan P. (2005), Health@home: the work of health information management in the household (HIMH): implications for consumer health Informatics (CHI) innovations, in “Journal of American medical informatics”, 12, 6, pp. 648-656 Suchman L., Trigg R., Blomberg J. (2002), Working artefacts: ethnomethods of the prototype, in “British Journal of Sociology”, 53, 2, pp. 163-17
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
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