Abstract
Personal health information management (PHIM) is a broad endeavor that requires the patient to navigate many different types of information. Including patients performing a variety of tasks and roles to make information useful. I ask the question: what practices constitute a patient’s personal health information management socio-technical assemblage? By doing this I am interested in understanding how PHIM is an assemblage of different actors, tools, technologies, information, and materialities that form a heterogeneous network to motivate the patient’s health maintenance and wellbeing. I describe information practices, planning and sense making practices that patients engage to begin to define this assemblage, and the social actors and materialities that manifest and stabilize. Then, I discuss three key commitments learned from this approach, namely: the personal aspect of PHIM, the role of physical and digital materials on PHIM, and the role of information practice materialities.
Highlights
There are times throughout our lives when we become a patient
There is a wide spectrum of use and implications in the over 200 personal health record (PHR) systems in the US (Nazi et al 2010) that are in use or in development, yet these differences in design and approach must culminate in a single vision: to supply patients with information about their healthcare
With the drastic growth in personal health tracking, online health support communities, and the myriad of ways patients can access information and how patients are tracked through their life and through the healthcare system, it is more critical than ever to understand personal health information management (PHIM) in a way that keeps pace with other technological and information management phenomena
Summary
A patient is handed a letter their spouse received in the mail about an upcoming appointment at the hospital. This example shows a few different components: the printing out of information from an online personal health record, generating a list of questions beforehand on a piece of paper, information occurring through conversation with the patient’s spouse, the preference of reading a book in the waiting room, the importance of space and place, the consideration and purposeful use of materials to represent the information, having a family member present in the appointment, and how to organize and transport everything Each of these components come together in a type of harmony that allows for the patient to be well prepared and ready for their clinical appointment. Patients are agentic throughout this process, doing purposeful work to bring together different elements that give way to a heterogeneous network that is personal health information management This is why I use the term catalyst to describe assemblages of PHIM. Surveying the final products of this analytical process left me with the notion that they clearly and accurately represented each case in great detail (Miles and Huberman 1994; Northcutt and McCoy 2004)
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