Enrico Maria Piras

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 ...

Integrating mHealth in Oncology: Experience in the Province of Trento.

Background The potential benefits of the introduction of electronic and mobile health (mHealth) information technologies, to support the safe delivery of intravenous chemotherapy or oral anticancer therapies, could be exponential in the context of a highly integrated computerized system. Objective Here we describe a safe therapy mobile (STM) system for the safe delivery of intravenous chemotherapy, and a home monitoring system for monitoring and managing toxicity and improving adherence in patients receiving oral anticancer therapies at home. Methods The STM system is fully integrated with the electronic oncological patient record. After the prescription of chemotherapy, specific barcodes are automatically associated with the patient and each drug, and a bedside barcode reader checks the patient, nurse, infusion bag, and drug sequence in order to trace the entire administration process, which is then entered in the patient’s record. The usability and acceptability of the system was investigated by means of a modified questionnaire administered to nurses. The home monitoring system consists of a mobile phone or tablet diary app, which allows patients to record their state of health, the medications taken, their side effects, and a Web dashboard that allows health professionals to check the patient data and monitor toxicity and treatment adherence. A built-in rule-based alarm module notifies health care professionals of critical conditions. Initially developed for chronic patients, the system has been subsequently customized in order to monitor home treatments with capecitabine or sunitinib in cancer patients (Onco-TreC). Results The STM system never failed to match the patient/nurse/drug sequence association correctly, and proved to be accurate and reliable in tracing and recording the entire administration process. The questionnaires revealed that the users were generally satisfied and had a positive perception of the system’s usefulness and ease of use, and the quality of their working lives. The pilot studies with the home monitoring system with 43 chronic patients have shown that the approach is reliable and useful for clinicians and patients, but it is also necessary to pay attention to the expectations that mHealth solutions may raise in users. The Onco-TreC version has been successfully laboratory tested, and is now ready for validation. Conclusions The STM and Onco-TreC systems are fully integrated with our complex and composite information system, which guarantees privacy, security, interoperability, and real-time communications between patients and health professionals. They need to be validated in order to confirm their positive contribution to the safer administration of anticancer drugs.

Prototyping a Personal Health Record Taking Social and Usability Perspectives into Account

This paper presents the process of design involved in prototyping a Personal Health Record (PHR), a patient-centered information and communication hub. As the PHR has to be used by laypeople, we focused on their health related activities (i.e. information management) carried out in the household using a sociological perspective to elicit the infrastructural requirements of the IT. We identified three distinct document management strategies (zero effort, erratic, networking) and ‘translated’ them into three design characteristics: flexibility, adaptability and customizability. We argue that the key to such PHR success is its capability to support the existing activities carried out by laypeople in managing their health record.

Optimisation and validation of a remote monitoring system (Onco-TreC) for home-based management of oral anticancer therapies: an Italian multicentre feasibility study

Introduction Despite the growing number of oral agents available for cancer treatment, their efficacy may be reduced due to the lack of adherence, inappropriate adverse event self-management and arbitrary dose adjustment. The management of anticancer therapies could exponentially benefit from the introduction of mobile health technologies in a highly integrated electronic oncology system. Methods and analysis We plan to customise and fine-tune an existing monitoring TreC platform used in different chronic diseases in the oncology setting. This project follows a multistep approach with two major purposes: 1. participatory design techniques driven by Health Literacy and Patient Reported Outcomes principles in order to adapt the system to the oncology setting involving patients and healthcare providers; 2. a prospective training-validation, interventional, non-pharmacological, multicentre study on a series of consecutive patients with cancer (20 and 60 patients in the training and validation steps, respectively) in order to assess system capability, usability and acceptability. The novel Onco-TreC 2.0 is expected to contribute to improving the adherence and safety of cancer care, promoting patient empowerment and patient–doctor communication. Ethics and dissemination Ethical approval was obtained from the Independent Ethics Committees of the participating institutions (CEIIAV protocol Number 2549/2015; reference Number 1315-PU). Informed consent will be obtained from all study participants. Findings will be disseminated through peer-reviewed journals, conferences and event presentations. Trial registration number ClinicalTrials.gov (NCT02921724); (Pre-results). Other study ID Number: IRST100.18.

Using a Mobile App to Manage Type 1 Diabetes: The Case of TreC Diabetes

Type 1 diabetes is chronic condition due to the autoimmune destruction of the insulin-producing beta cells in the pancreas. We present TreC Diabetes, a system consisting of a mobile diary and a web dashboard allowing patients to record disease-related information, which can be visualized by diabetologists through a dedicated dashboard. We also present the results of an observational study to assess the user acceptance of the system.

La promozione della salute come forma di welfare aziendale: la co-costruzione di un’iniziativa di WHP tra prevenzione primaria e processi di simbolizzazione

La promozione della salute sui luoghi di lavoro e oggetto di riflessione e analisi di discipline che vanno dalla medicina preventiva fino alle scienze aziendali, passando per la dietologia e le scienze motorie. Il nostro articolo si propone invece di contribuire al dibattito sulla promozione della salute sui luoghi di lavoro da una prospettiva organizzativista, indagandone gli aspetti processuali e la significazione simbolica nei contesti organizzativi. A questo scopo, il lavoro documenta e analizza la progettazione di Key to Health, un’iniziativa di Workplace Health Promotion condotta presso un grande istituto di ricerca con sede nella Provincia Autonoma di Trento. Tramite l’analisi dello studio di caso del progetto Key to Health, l’articolo intende riflettere sui processi di co-costruzione di un intervento di Workplace Health Promotion, soffermandosi sulle tensioni emergenti dai diversi modi di concepire e rappresentare la gestione della salute all’interno di un’organizzazione.

Kairotic and chronological knowing: diabetes logbooks in-and-out of the hospital

Purpose The paper reflects on the role of knowledge artefacts in the patient-provider relationship across the organisational boundaries of the clinical setting. Drawing on the analysis of the diabetes logbook, the purpose of this paper is to illustrate the role of knowledge artefacts in a fragmented system of knowledge through the study of two distinct practices: “logbook compiling” and “consultation in the surgery”. Design/methodology/approach The theoretical framework of analysis is rooted in the tradition of practice-based studies which envisions knowledge as the emerging, precarious and socially constructed product of being involved in a practice. The paper follows a designed qualitative research, conducting semi-structured interviews, participant observation and artefact analysis. Findings The knowledge artefacts support different and partially irreducible forms of knowledge. Knowing-in-practice is accomplished by means of different activities which contribute to the reshaping of the knowledge artefact itself. The analysis of the “knowledge artefact-in-use” reveals that different actors (doctors and patients) adopt two different perspectives when investigating the chronic condition. Clinicians are interested in a chronological representation of patient data while patients and families are interested in making sense of specific situations, adopting a kairotic perspective (Kairos: the right moment) that emphasises the instant in which something significant for someone happens. Originality/value The analysis of the knowledge artefacts-in-use has a twofold outcome. On one hand, it illustrates the mutual shaping of knowing, artefacts and practices. On the other hand, it shows how knowledge artefact can become pivotal resources in a fragmented system of knowledge.

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.