alth 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) work of being a patient: aligning citizens to health care system
Piras, Enrico Maria;
2008-01-01
Abstract
alth 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...I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
