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

Abstract

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.

Information Infrastructures for eHealth

“…Organizing shared care solutions around individual patients is expected to help overcome existing communication barriers between institutions and across administrative levels. For instance, a shared patient record system, may help to bridge unconnected "islands" and allow a more efficient overall utilization of resources (Ball et al 2007;Piras and Zanutto 2010). Furthermore, providing patients with solutions that will allow them to make informed choices can put them in a quasi-customer role.…”

Between Personal and Common: the Design of Hybrid Information Spaces

“…Breaking away from the organizing logic of the healthcare system entails first of all making sense of idiosyncratic patient information management practices that remain mostly uncharted. As Piras and Zanutto have pointed out, these practices are in some ways invisible as they are interwoven with everyday routines and objects that are part of the private sphere (Piras and Zanutto 2010). Designing systems adapted to current patient information management practices would require intensive engagement with the everyday Bwork^of patients through an iterative combination of ethnography, (Greenhalgh et al 2010).…”

“…Prior research on PHRs' use and user practices has identified a number of tensions. For instance, patients and health providers may have diverging views on personal health information (Piras and Zanutto 2010) and on the distribution of duties among the patient and the provider (Nazi 2013;Turvey et al 2014). Tang and colleagues argue that from a healthcare provider's perspective, not all patient-supplied data can inform providers' decision making; this information could be Bclinically irrelevant^or become overwhelming for a healthcare provider to review (Tang et al 2006).…”

“…Archer and collegues report that many PHR systems are physician-oriented in practice and they argue for the inclusion of patient-oriented functionalities if improvements in health outcomes are to be expected (Archer et al 2011). Piras and Zanutto, show how PHRs' formalization of information practices may oversimplify the complex array of patients' practices in maintaining personal health information (Piras and Zanutto 2010). Overall, PHRs need to cater for personal health information management work including Binvisible^work, such as collecting, organizing and maintaining information as well as researching using the internet and remembering questions to ask.…”

“…If these are not considered in the design phase, the PHR will poorly align with patients' needs and will have limited use or even, no-use. Similarly, Piras and Zanutto showed that the design of PHRs Brequires specific attention to be paid to the different forms assumed by self-care practices in domestic spaces, and to the various activities with which they intersect^ (Piras and Zanutto 2010). Cabitza and colleagues argue that conceptualizing PHRs as tools for seamless flow of information downplays their potential to be more collaboration and communication oriented .…”