Grant: Operating Grant: Joint Programme on Neurodegenerative Disease Research (JPND)

Parkinson disease is a chronic neurodegenerative disorder that affects 80,000 Canadians and is expected to double by 2030 worldwide. Care needs are complex. The traditional model of care delivery centred in the physician has strains and limitations. Care Integration has the potential to improve patient quality of life by tailoring the care approach, facilitating the navigation of the patient and caregiver in the complex map of care resources available in the hospital and the community. Informed by the Ontario-developed Framework for Chronic Disease Prevention and Management, we have developed an Integrated Parkinson's disease Care Network in Canada with a significant attention to the participation of patient and care partners in the design of the proposed solutions. Following this model, we are now poised to develop it in other countries partnering with seven reference Parkinson's European centers. We will start by assessing 1) What are the views and needs of people with Parkinson's and care partners in a care delivery model based at home and the community, and 2) How can the implementation of a care delivery model based at home/community be successful in different social geographies and health-economical contexts. We will also develop a novel integrated solution of health technologies to optimize complex care delivery in PD using a patient-center approach throughout its entire development. This solution, the PD virtual coach, will be a powerful tool for empowerment of patients for self-management. Using the knowledge gathered during the early project activities, we will test the real-life feasibility of a patient-centred multi-national integrated care delivery model to set the foundations of its dissemination into national healthcare systems. iCARE-PD care delivery model has the potential to improve the lives of patients with PD and potentially with other neurodegenerative disorders, with optimal use of taxpayer money across a vast geography in Europe and Canada.