Objective: To design a self-management technology (eCARE-PD platform) that enables people with PD (PwPs) to manage collaboratively with care partners and health care providers (HCPs) their own health and care.

Background: Living with PD is a challenge to patient’s lives. PwPs often experience fragmented care in the healthcare system. We have started to develop a novel pragmatic patient-centred care model for PD, the Integrated Parkinson Care Network, supporting 1) Integrated Care, 2) Self-management Support and 3) Digital Health Technology. Electronic Health (eHealth) applications are being explored in chronic conditions to share health-related information, promote interactive health tracking, and support self-management.

Method: We conducted participatory design workshops (two with PwP/care partners, n=7-9 each; one with Health care professionals/HCPs, n=5) to inform the development of the first functional prototype of eCARE-PD by 1) specifying the context of use of eCARE-PD in the PwPs’ life using a “Trajectory Framework”, 2) Defining the requirements and design implications in a socio-technical perspective, and 3) Determining the effective components of eCARE-PD for self-management. Data collected underwent Qualitative Content Analysis followed by “Trajectory Mapping” or Interaction Analysis.

Results: Trajectory mapping: Living with PD is met with a variable combination of uncertainty, life disruption, and emotional impact in the patient/family. Reliable information or strong support network can influence self-management practices. Conceptual Role of eCARE-PD: support the management of symptoms, enhance the quality of life and social support. Specific roles of eCARE-PD: 1) to create a sense of closeness with HCPs, 2) Build the structure of resources to support self-management over time. Specific recommendations to enhance the user experience: intuitive design, inter-connectivity with other devices, customizable care plan that includes care priorities and coaching activities with self-tracking and feedback.

Conclusion: PwPs and care partners welcome the use of eCARE-PD to enhance knowledge about living with PD and optimize communication with the healthcare team. eCARE-PD should address the clinical domains of the disease and its social impact. The use of co-design with end-user input in eCARE-PD is expected to inform the development of a first functional prototype with optimal usability.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/ecare-pd-a-digital-health-platform-for-patient-empowerment-and-online-health-tracking-experiences-with-co-design/