Support for European Reference Networks: efficient network modelling and validation

Specific Challenge: Article 12 of Directive 2011/24/EU establishes the legal framework for creating a system of European Reference Networks (ERN) in the EU. Centres of Expertise will be able to collaborate, coordinate and share their knowledge across borders. This collaboration is essential to ensure efficiency of health systems and access to high quality health care, especially for patients who suffer from conditions that require a particular concentration of resources or expertise, such as rare diseases, highly expensive treatments or where the number of professionals in a certain field is low.

Although much effort and many resources have been devoted to support research projects in the area of healthcare there is a clear lack of evidence with regard to efficient and validated models of organisation of complex networks such as ERNs. Increasing complexity of the healthcare system and the interactions among the different players along with the introduction of new technologies highlights the need for more research to allow new healthcare system models to address effectively all potential system needs, states and variables.

The demonstration and validation project of ERN as an innovative model of cooperation and work between highly specialized healthcare providers, which will foster transfer of knowledge to clinical and organisational practice (e.g. e-health, healthcare related information systems, and clinical trials) is required.

Support is therefore required in facilitating:

• Favourable framework conditions for the establishment and functioning of the ERNs for the deployment of the intended innovative networking activities and services for patients and healthcare professionals across the EU;

• The design and validation of a model of network organisation that will be based in system modelling research methodologies and will build technical foundations and knowledge and integrating these with the organisational, technical, and cultural aspects of a ERN, and the identification of best practice and its effective implementation in several areas related with the mandate of the Directive.

Scope: Proposals should provide coordinated support to the activities of the ERN under the framework of Directive concerning the following aspects:

• Validation of a model for the optimal organisation, governance, maintenance and continuous monitoring and evaluation of the ERNs and their centres. Such methodology would then be integrated into the legal framework;


• Support the existing ERN in implementing their goals. The support may relate for example to coordination of ERN collaborative activities, communication among partners and other healthcare providers and centres and dissemination of results;

• Support the development of new Networks based on already identified needs by the Commission, health authorities and experts;

• In collaboration with relevant stakeholders, identify any new conditions and diseases that can be regarded as future Priority Networks and develop a roadmap of Networks priorities, which are needed in the context of the Directive of Cross border Healthcare;

• The identification and implementation of validated specific networking tools and solutions in the following areas (Improving the research capacity; current models on the use and impact of guidelines & protocols, integrated and standardised IT platform including telemedicine and other communication resources, validation of training models in highly specialised care (simulation).

The Commission considers that proposals requesting a contribution from the EU of between EUR 1 and 2 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of proposals requesting other amounts.

Expected impact: Implementation of a validated system methodology for the optimal organisation, governance, maintenance and continuous monitoring and evaluation of ERN and their centres.

Such methodologies should then be integrated into the legal framework and monitored by the Commission.

ERN will be established and supported in order to reach the goals as provided in Directive 2011/24/EU

The organisational and resource requirements of the piloted models (data, personnel and financing) will be tracked, creating evidence on benefits and ensuring equity and cost efficiency.

Each proposal should present quantitative or qualitative indicators to quantify the potential impact along the points listed below.

·         Effectiveness of the model and tools validated in the Network in terms of efficiency, performance and outcomes of the Networks and Centres. An independent and external evaluation methodology will be used

·         Satisfaction of patients and healthcare providers

·         Number and type of effective tools and methods developed.

Type of action: Coordination and support actions