Bridging the gaps between health, social and local services, to improve care for people living with rare and complex conditions: key findings of the EU-funded INNOVCare project and its case management pilot

Abstract

Introduction: The EU-funded INNOVCare project aimed at bridging the gaps in the co-ordination between health, social and support services and at developing an innovative care pathway for patients with rare diseases (RD) and other complex conditions. Representatives of RD patients were highly involved in the design and implementation of the project's activities, services and research. Short description of practice change implemented: INNOVCare assessed the everyday and care needs of RD patients in Europe, implemented and evaluated a case management pilot, elaborated and shared good practices and training tools, and identified good key issues for the up-scaling of integrated care for RD and other complex conditions in Europe. Aim and theory of the change: Integrated care is essential for people living with a RD and their carers to overcome the care challenges and to access the services that they need. This will enable them to achieve a quality of life on equal footing with other citizens and to participate in society and in the job market to their highest potential. Target population and stakeholders: The project targeted people living with a RD and with other complex conditions, including undiagnosed, chronic diseases and/or with disabilities. The results of the European survey conducted within the project, show the serious impact of RD and the complexity of care pathways e.g. 65% of respondents have to visit different health, social and local services in a short period; 67% find that these services communicate badly between them; for 6 in 10 care organisation is hard to manage. Timeline: The project ran from 2015 to 2018. The pilot was implemented from March 2017 to August 2018. Highlights: INNOVCare's pilot of consisted of implementing a regional case management service for RD and complex conditions. Patients/carers received the service for 9 months. The results of the impact assessment show that the case management services improved patient's/carers' level of information about their disease, their rights and available services. Additionally, their capacity to manage their care increased. INNOVCare also published an outline of the role and of the training of case managers for RD and will soon be releasing a full training manual on case management for RD. Comments on sustainability: The project has released a set of recommendations aiming at supporting the up-scaling and sustainability of such care models. These relate for e.g. to the implementation of EU and national policies, to the continuity of important EU-wide networks, to the need to sustain funding at EU and national level. Comments on transferability: Research from the project identified key priorities that European countries need to address to implement integrated health and social care. These include collaboration and coordination at structural political level, multidisciplinary teams, care coordination, and empowerment of people living with the disease. Conclusions: Integrated care is essential for people with complex conditions to overcome the care challenges. Case management services have proved to increase patients'/carers' level of information about their disease, their rights and available services while also increasing their capacity to manage their care.

Keywords

• case management
• case manager
• complex cases
• rare diseases