The purpose of this paper is to raise issues about the design of personal health record systems (PHRs) and self-monitoring technology supporting self-care practices of an increasing number of individuals dealing with the management of a chronic disease in everyday life. It discusses the results of an ethnographic study exposing to analysis the intricacies and practicalities of managing diabetes “in the wild”. It then describe and discuss the patient-centric design of a diabetes journaling platform that followed the analysis.
The study includes ethnometodological investigation based on in depth interviews, observations in a support group for adults with type 1 diabetes, home visits, shadowing sessions and semi-structured interviews with a series of medical experts (endocrinologists, general practitioners and diabetes nurses). Findings informed the design of a proof-of-concept PHR called Tag-it-Yourself (TiY): a mobile journaling platform that enables the personalization of self-monitoring practices. The platform is thoroughly described along with an evaluation of its use with real users.
The investigation sheds light on a series of general characters of everyday chronic self-care practices, and how they ask to re-think some of the assumptions and connotations of the current medical model and the traditional sick role of the patient – often unreflectively assumed also in the design of personal technologies (e.g. PHR) to be used by patients in clinically un-controlled settings. In particular, the analysis discusses: the ubiquitous nature of diabetes that is better seen as a lifestyle, the key role of lay expertises and different forms of knowledge developed by the patient in dealing with a disease on a daily basis, and the need of more symmetrical interactions and collaborations with the medical experts.
Reported discussions suggest the need of a more holistic view of self-management of chronic disease in everyday life with more attention being paid on the perspective of the affected individuals. Findings have potential implications on the way PHR and systems to support self-management of chronic disease in everyday life are conceived and designed.
The paper suggests designers and policy makers to look at chronic disease not as a medical condition to be disciplined by a clinical perspective but rather as a complex life-style where the medical cannot be separated by other aspects of everyday life. Such shift in the perspective might suggest new forms of collaborations, new ways of creative evidence and new form of knowledge creation and validation in chronic self-care.
The paper suggests re-thinking the role of the patient in chronic-disease self-management. In particular, it suggests giving more room to the patient voice and concerns and suggest how these can enrich rather than complicate the generation of knowledge about self-care practices, at least in type 1 diabetes.
The paper sheds light on everyday intricacies and practicalities of dealing with a chronic disease. Studies of self-care practices that shed light on the patient perspectives are sporadic and often assume a clinical perspective, its assumptions (e.g. biomedical knowledge is the only one available to improve health outcome, doctors know best) and implications (e.g. compliance, asymmetry between the specialist and the patient).
Storni, C. (2014), "Diabetes self-care in-the-wild: Design challenges for personal health record systems and self-monitoring technologies", Information Technology & People, Vol. 27 No. 4, pp. 397-420. https://doi.org/10.1108/ITP-02-2013-0032
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