Alberto Zanutto

Prescriptions, X-rays and Grocery Lists. Designing a Personal Health Record to Support (The Invisible Work Of) Health Information Management in the Household

For many years the introduction of Electronic Health Records (EHRs) in medical practice has been considered the best way to provide efficient document sharing among different organizational settings. The actual results of these technologies, though, do not seem to have matched expectations. The issue of document sharing has been lately readdressed by proposing the creation of patient-controlled information and communication technologies, Personal Health Records (PHRs), providing laypeople the tools to access, manage and share their health information electronically by connecting to the existing EHRs and other institutional information systems. In this scenario, patients are called to play a major role in coordinating healthcare professionals by providing them the information they need. From a CSCW perspective the PHR offers an interesting case to reflect on cooperative work that requires new infrastructures that intersect organizational settings and extend into domestic environments. So far though, there has not been enough research to shed light on the self-care activities carried out in the households and how these integrate with the organizational practices of doctors and institutions. Our analyses show that health record keeping is an articulation work necessary for meetings with doctors to proceed smoothly. To do so, people integrate the information contained in medical documents by working on them with annotations, underlinings and integrations. Moreover, we show that health record keeping is a spatialized activity that is inextricably interwoven with the everyday routine and objects. Finally, we provide a tentative classification of three different strategies laypeople use to sort out health records: minimum effort, adaptive, networking.

“One day it will be you who tells us doctors what to do!”. Exploring the “Personal” of PHR in paediatric diabetes management

Purpose – Personal Health Record (PHR) systems make possible to integrate data from different sources and circulate them within the illness care and management network. The new arrangements prefigure a redefinition of the relations among healthcare practitioners, patients, and caregivers. The purpose of this paper is to consider the role and the meanings attributed to information when a technical artifact enables new forms of communication within the healthcare management network. Design/methodology/approach – The authors adopted a qualitative research design, conducting a pre-post analysis on a theoretical sample of patients and of a paediatrics department. The authors selected 12 patients (six females and six males) aged between four and 20 years old. Findings – The patients were willing to act as “stewards of their own information” (Halamka et al., 2008), but they interpreted this role in terms of restricting access to their information, rather than facilitating its dissemination. In fact, the PHR was ...

PHR governance requirements leadingto patient selection

Personal Health Record (PHR) projects have been supported in recent years by several health institutions. The aim has been to involve patients, the idea being that patients must become more significant in health infrastructure policy. The paper presents some results concerning a PHR system implemented in a region of North Italy. The system has been active since 2011, and more than 10% of the region’s residents use it. The purpose of this paper is to highlight how an extensive PHR infrastructure planned for everybody has become an interesting ‘‘tool’’ for specific intensive health situations. Drawing on the results of 20 interviews with the most frequent users of the system, we have identified three categories of users: individual or family health controllers, therapy driven managers, and complex illness managers. These diverse ways to adopt the infrastructure only partially meet governance expectations.

Tinkering Around Healthcare Infrastructures: Nursing Practices and Junction Work

Introduction of healthcare infrastructures is often accompanied by workarounds, persistence of paper-based documents and of technologies that the innovation was intended to replace, raising the question as to whether they are by-products or intrinsic to infrastructure innovation processes. This work, through a longitudinal case study of a hospital information system long in use, investigates their origin, their role in enabling the system’s affirmation, and the difficulty of eliminating them. Through a qualitative methodology, semi-structured interviews and ethnography, we reconstruct the history of the system and the information management practices around it. Our analysis reveals that the effectiveness of the tool implemented derived largely from ‘junction work’ performed by the nurses, which ensured the flow of data among different electronic and paper-based information systems. Moreover, in carrying out their junction work the nurses intervened to modify, enrich and complete the information contained in the different systems.

Managing complex therapies outside hospitals. An analysis of GPs practices of how to support medication at home.

Support systems for the management of prescriptions are commonplace in hospitals, whilst they are rarely found in general practice. This exploratory study draws on a qualitative survey conducted with focus groups to investigate the information needs of General Practitioners (GPs) in regard to the therapeutic management of complex patients, the purpose being to identify possible areas of application. The question addressed is whether the systems existing in hospitals can be usefully adapted and used by GPs or if a different approach needs to be adopted to design other tools. The analysis shows that the information needs of GPs relative to medication management are significantly different from those of their hospital colleagues because the former are not directly responsible for the administration but instead operate within a care network on which they cannot exercise direct control. This study suggests that support systems for therapy management should be designed on the assumption that it derives from cooperative work by a heterogeneous network of actors, and therefore with functionalities intended to satisfy the coordination needs of all the actors involved in the process.