Project: Integrated Parkinson Care Networks: addressing complex care in Parkinson disease in contemporary society

Acronym iCARE-PD (Reference Number: HESOCARE-329-073)
Duration 01/01/2019 - 31/12/2022
Project Topic In EU, the cost and burden of brain disease are overwhelming (€800 billion/yr). Parkinson disease (PD) is a non-curable neurodegenerative disease with complex motor and non-motor care needs. PD is one of the top 10 most costly brain disorders in EU, and its incidence is expected to double by 2030. The need for services will increase and consequently the burden for healthcare systems. How can we address complex care delivery in a manner that is cost-effective and sustainable NOW? Multispecialty care is an attractive care delivery model, but past designs failed to be effective or sustainable in PD. Partners in iCARE-PD have started to develop innovative sustainable care models shifting from “(in)outpatient care” to “home-based community centred integrated health care” that focus in Integrated Care, Self-management support (SMS) and Technology-enabled Care (TEC) using a patient-centred approach. We hypothesize that this set of interventions can play a critical role in a solution to the challenges of complex care in PD, enhancing the patient dignity and care equity. For the success of this care model in a varied social/economic landscape, we need to (Aim 1. ASSESS) determine WHAT (Question1), and HOW (Question2) Integrated Care and Self-Management Support can be implemented across different social contexts by A. collecting patient/care partners priorities for care and B. determining social, economic, and geographical barriers to PD care. Due to an anticipated high potential of transferability across countries, we will develop (Aim 2. DEVELOP) patient-centred TEC to optimize complex care delivery in PD and a new holistic measure of care with social meaning. Finally, we will (Aim 3. IMPLEMENT) test the feasibility of the resulting patient-centred multi-national integrated care delivery model. iCARE-PD was built based on social and cultural diversity of its partners, with secured access to existing national research networks and patient associations. iCARE-PD is made of a wide multidisciplinary team of internationallyrecognized PD researchers, social scientists, health geographers, health economists, engineers, computer scientists, experts in law/ethics, patient-centred design, and complex interventions. In iCARE-PD, these experts will work in a coordinated fashion, which will significantly enhance the efforts of each centre in this field and enormously promote activities for knowledge dissemination and translation. We aspire to deliver health care product validated by the patients and care partners including a home-based community-centred integrated care model, a widely accessible self-management toolkit and an integrated TEC platform. The success and experience gained in iCARE-PD in care model delivery will be transferable to other neurodegenerative disorders.
Call Multinational research projects on Health and Social Care for Neurodegenerative Diseases

Project partner

Number Name Role Country
1 University of Ottawa Coordinator Canada
2 Charles University Partner Czech Republic
3 Toulouse University Hospital Partner France
4 Philipps University of Marburg Partner Germany
5 The Mater Misericordiae University Hospital Partner Ireland
6 Fundación Investigación HM Hospitales Partner Spain