Patient Innovation: An Analysis of Patients' Designs of Digital Technology Support for Everyday Living with Diabetes

Abstract

The aim of this paper is to identify characteristics of patients' contributions to innovation in health information technology (HIT). The paper outlines a theoretical definition of patient innovation and presents an analysis of four digital prototypes and 22 low-fidelity mock-ups designed by people affected by the chronic illness diabetes mellitus. Seventeen families (a total of 60 people) with one or more diabetic family members participated in design activities in a four-year research project focused on the design of digital support for everyday living with diabetes. Our analysis documented the originality of the analysed patient designs and identified three characteristics of patients' designs: socio-technical networks, objects with associated personal meanings and technology supporting the expression of identity. The paper concludes that patient innovation is defined by what is perceived as new by patients and/or others within the social system of adaptation. The analysed patient designs are original (as distinct from replications of or improvements on known products), and their characteristics are innovative contributions to the social system of everyday living with diabetes (i.e. they are perceived as new to the patients in the research study). The results of the analysis contribute to the credentials of patients as key actors in HIT innovation and call for participatory approaches in health informatics.