Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

Abstract

eHealth technologies play a role in the development of integrated care models for people living with Parkinson disease by improving communication with their health care teams and support self-care practices in a personalized way. This article presents a co-design approach to designing an eHealth technology, the eCARE-PD platform, that addresses the needs and expectations of people living with Parkinson disease, generates tailored care tips, and recommends actions for managing care priorities at home. We use a co-design approach involving four main iterative phases: (1) preparation, (2) mapping, (3) testing and using, and (4) co-producing solutions and requirements. This approach uses several methods to engage people directly to design this technology. The study allowed us to identify design principles to be integrated in the development of the eCARE-PD platform. These principles incorporate the expectations of future users, which were expressed during the iterative phases of the co-design process: (a) six key design features based on users’ needs and expectations, (b) six main issues users raised during a test at home and key features for improving the design of the eCARE-PD platform, and (c) collective solutions to design an interactive, meaningful, tailored, empathic, and socially acceptable technology. The results of the successive phases of the co-design process allow us to underline the progressive constitution of a technology defined over successive iterations as a digital companion supporting the self-care process at home and having the capacity to generate tailored digital health communication.