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.
KeywordsPersonal health record Healthcare infrastructures Health record management Invisible work Self-care Qualitative research Electronic health record
The present article is a totally collaborative effort by two authors. If, however, for academic reason individual responsibility is to be assigned, Enrico Maria Piras wrote Introduction, paragraph 3, 5 and the conclusions; Alberto Zanutto wrote paragraph 2, 4, 6.
This work is a part of a larger research project funded by the Department of Health and Social Politics of the Autonomous Province of Trento (Italy). The authors would like to thank all the members of the e-Health unit of Fondazione Bruno Kessler for the discussions and comments that helped us to narrow the focus of our research. A special thank goes to the participants of the workshop “Infrastructures for Healthcare” (Copenhagen 18–19 June 2009) for the feedbacks to the presentation of an early version of this work and to the three anonymous reviewer for their comments and suggestions.
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