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.

Telemedicine as an Untapped Opportunity for Parkinson’s Nurses Training in Personalized Care Approaches

“…While patient centeredness is often the basic idea behind many telemedicine solutions [ 22 ], its success is not guaranteed [ 23 ]. Patient centricity is created, on the one hand, by technology that is easy to use for PwPs [ 24 ], and, on the other hand, by staff that accompanies PwPs in the process of telemedicine healthcare [ 12 ]. Telemedicine solutions are often part of complex care models that require staff to navigate PwPs through this complexity [ 12 ].…”

Co-Designing an Integrated Care Network with People Living with Parkinson’s Disease: A Heterogeneous Social Network of People, Resources and Technologies

“…In response to the complex situation faced by PwP, a group of neurologists have developed the project on integrated Parkinson care networks: addressing complex care in Parkinson disease in contemporary society (iCARE-PD) [ 17 ]. This multidisciplinary and international study uses a co-design approach to develop a home-based health care delivery model based on integrated care, self-management support and technology-enabled care [ 18 ]. We used a co-design approach largely informed by the field of participatory design and Experience-Based Co-Design (EBCD) where the patients’ perspective is seen as a central component to the design process [ 19 , 20 ].…”

Framework to Develop a Resilient and Sustainable Integrated Information System for Health Care Applications: A Review

“…Similarly, Najimudeen, Aldheleai and Ubaidullah [8], revere ICT mediation in facilitating access to medical care and information, branding its support within the healthcare sector as "healing at a distance". However, despite the involvement of ICT in improving healthcare, several authors have advocated for the redesigning of ICT within the healthcare arena [14,25].…”