INNOVCare logo
Bridging the gaps between health, social and local services to improve care
of people living with rare and complex conditions

What we do

INNOVCare is a 3-year European project that addresses the social challenges faced by people living with rare complex conditions.

INNOVCare (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) aims to bridge the gap in the co-ordination between medical, social and support services in the European Union Member States.

This EU-funded project will ensure that the social needs of people living with a rare disease are voiced and taken into account. It will also support the EU and other Member States in implementing necessary structural reforms in social care systems by developing and testing a holistic, person-centred care pathway. This will mean strengthening partnerships between care providers – public, private and civil society organisations.

INNOVCare will run from October 2015 until October 2018.

Care pathway of INNOVCare

INNOVCare’s Activities

  1. Assessment of unmet social needs of people living with a rare disease and their families in Europe and analysis of existing care models in a selection of EU Member States;
  2. Proposal of an innovative care pathway bringing together national resource centres for rare diseases and regional case managers, in partnership with public bodies:
  • Implementation of a pilot of this pathway in Romania;
  • Evaluation of the socio-economic impact and a cost-benefit analysis of the care model;
  1. Analysis of opportunities to upscale the model to other Member States and beyond rare diseases;
  2. Exchange of good practices between resource centres gathered in a European network of services;
  3. Strengthening partnerships between public, private and civil society organisations.

How does the innovative holistic care pathway work?

Care pathways refer to how national systems seek to provide seamless care and treatment to patients. INNOVCare approaches care pathways from a multidisciplinary perspective, which enables the exchange of information and coordination between health, social and other support services at national, regional and local levels. Integrated care pathways are expected to improve the quality of care, lead to higher levels of efficiency for Member States and reduce waiting times and therefore burden for patients and families.

INNOVCare aims to create an innovative care pathway that links health services with the social and support services that people with a rare disease and their families use on a daily basis.

These support services that people living with a rare disease use range from employment, to school, to transport or leisure services. This care pathway will ensure the transfer of information and expertise between service providers.

It will also involve creating resource centres for rare diseases and regional case managers, which will help to relieve the burden of care management for patients and their families and carers.

Project structure

Coordination (Work Package – WP1): Ministry of Health, Social Services and Equality, Spain  and Finovatis, France

Project Evaluation (WP2): Inštitut za Ekonomska Raziskovanja, Slovenia

Communication & Dissemination (WP3): European Organisation for Rare Diseases (EURORDIS), France

State of the Art of social care provision for Rare Disease patients (WP4): EURORDIS, France

European Network of Resource Centres & Case Handlers (WP5): EURORDIS, France

Pilot of integrated & personalised social service provision (WP6): Romanian Prader Wili Association & County of Sălaj Romania

Evaluation of the Pilot Social Experimentation (WP7): Zentrum für Soziale Innovation, Austria

Evaluation of the economic impact of the innovative partnership (WP8): Karolinska Institutet, Sweden

Social policy innovation based structural reforms (WP9): Zentrum für Soziale Innovation, Austria