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Abstracts from the International Congress of Parkinson’s and Movement Disorders.

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Co-designing a meaningful, humane and personalized eHealth platform (eCARE-PD) for people living with Parkinson’s Disease

S. Grosjean, JL. Ciocca, E. Poitras, A. Gauthier-Beaupré, D. Côté, D. Grimes, T. Mestre (Ottawa, Canada)

Meeting: MDS Virtual Congress 2021

Abstract Number: 1288

Keywords: Parkinson’s

Category: Technology

Objective: To design a personalized eHealth platform to support self-care and promote integrated care for people living with Parkinson’s Disease (PwP).

Background: There is evidence indicating that eHealth technologies can be effective or, at least promising, for supporting self-care in PD in the context of an integrated care model. In addition, personalized care is necessary to optimize care management models tailored to individual’s needs involving eHealth technologies.

Method: We used a co-design approach involving 4 phases and we have completed the phases 3 (test at home) and 4 (final solutions) [figure 1]. This approach used mixed methods to directly engage people in the design of the technology. Purposive sampling was used to select participants for the study [table 1]. Sampling criteria were developed in collaboration with our tertiary PD center to ensure adequate sampling in terms of gender, PD stage and age.

Results: The successive phases of the co-design process allowed us to underline the progressive constitution of a technology defined over successive iterations as a digital companion supporting self-care and having the capacity to generate tailored digital health communication. In the phase 3, 6 main usability problems and design issues were raised by the users [figure 2]. In the phase 4, 3 key design requirements have been identified for designing a meaningful, humane and personalized eHealth platform. The results allowed us to identify three complementary functionalities for a personalized eHealth platform: (a) preparation, self-representation about care priorities and self-tracking tool; (b) personal report and meaningful visualizations; and (c) tailored care recommendations and customizable educational and community resources. Our findings show that both tailoring strategies, namely system-driven tailoring (personalization) and user-driven tailoring (customization) should be integrated in the development of a personalized eHealth platform.

Conclusion: The development of more sophisticated personalized eHealth platform for PwP able to build recommendations systems supportive of self-care individualized to each PwP are warranted. The use of artificial-intelligence-based systems may support such tailored development of eHealth technologies that are deemed to become key components of integrated care networks.

Figure 1-

Table 1

Figure 2

To cite this abstract in AMA style:

S. Grosjean, JL. Ciocca, E. Poitras, A. Gauthier-Beaupré, D. Côté, D. Grimes, T. Mestre. Co-designing a meaningful, humane and personalized eHealth platform (eCARE-PD) for people living with Parkinson’s Disease [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/co-designing-a-meaningful-humane-and-personalized-ehealth-platform-ecare-pd-for-people-living-with-parkinsons-disease/. Accessed May 9, 2025.
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