The EUBIROD Network is an informal and voluntary collaboration between signatory parties started in 2013 after the successful conclusion of the EUBIROD project.

The Network includes advocates of the rights of people with diabetes, governmental/non governmental organizations, scientific societies, associations of health professionals and individual citizens, who agree, under the terms of signed Memorandum of Understanding, to jointly act for the common goal of creating a global shared platform for the structured exchange and publication of evidence-based diabetes information.

Together, the Parties agree to mutually promote the activities of the EUBIROD Network, as follows.

I. BACKGROUND

The EUBIROD project (2008-2012), sponsored by the European Union under the Health Information Strand of the Public Health Program (DG-SANCO), built upon the information system realized by the BIRO project on the basis of the principle of privacy by design, to extend its use for cross-border flow of diabetes information in nineteen European countries.

The system fosters the objectives of the Conclusions of the EU Council for the systematic data collection and monitoring of diabetes complications and health outcomes across Europe.
EUBIROD partners have been connected through a system that safely collect aggregated data and produce systematic EU reports of diabetes indicators, which can also be used to develop recommendations for policy makers.

The main output of the project has been the production of the “European Diabetes Report”: an analysis of quality of care and outcomes in diabetes based on standardized criteria over a reference population of 200,000 subjects.
The project supported improved information at both the micro and the macro levels by facilitating activities for planning and management of diabetes care in regional health systems and by delivering information that is directly applicable at the Community level by European institutions.

II. MISSION

The mission of the EUBIROD Network is to realize an international collaboration that shall ensure the continuous production and dissemination of diabetes information for policy, governance and health improvement.

The vision of the EUBIROD Network is to support and facilitate the integration of all diabetes data sources already available, in order to improve all policies against diabetes and to reduce its direct implications across the whole range of non communicable diseases.

In a time of financial pressure, an efficient use of the existing resources represents the only practical and most ethical solution available to fulfill these goals.

Today, a global diabetes information system can be immediately implemented.

The international Network will be able to inform policy makers and assist people with diabetes with timely information on the quality of care they receive and health outcomes associated with their conditions.

III. PURPOSE, SCOPE AND ACTIVITIES

To realize its vision, the EUBIROD Network shall adopt a strategy consolidated across several years of successful collaboration in the BIRO and EUBIROD projects.
The Network shall foster the application and implementation of a comprehensive approach, based on an agreed set of international standards, including a common data model and an open source software for the safe exchange of aggregate information already operational: the BIRO system.
The infrastructure includes a meta-registry of diabetes data sources, a platform to assess privacy standards, statistical routines for the delivery of diabetes indicators, tools for e-learning and regular dissemination activities.

The EUBIROD Network agrees to realize the EUBIROD platform through the following:

• maintenance and update of a global registry of diabetes data sources, including characteristics considered relevant for the production of diabetes indicators from sources e.g. national/regional databases, diabetes registries, etc
• maintenance and update of an agreed set of standardized definitions included in a common data dictionary
• design and development of specialized open source software that will be used to disseminate the application of electronic data management, statistical analysis and routine reporting in diabetes
• maintenance and update of a common infrastructure for the global exchange of diabetes information, ensuring the highest comparability and safest level of privacy and data protection
• quality improvement strategies for data and policy managers, through regular training (using modern means e.g. e-learning) and dissemination activities
• direct production of international diabetes reports
  The activities of the EUBIROD Network, subject to the availability of appropriate resources, include the following:
• organization of network dialogues to exchange experiences and identify best practices for the exchange of diabetes information; definition of common data standards for the interoperability and exchange of diabetes information; participation/organization of major events relevant for improving the conditions of people with diabetes
• coordination and conduction of international research projects
• software design and development for data collection, management, statistical analysis, reporting, data exchange and global information delivery
• routine reporting of diabetes indicators
• comprehensive training and dissemination to allow developers of diabetes registers to learn each other and participate to the further expansion of the BIRO System. management of the network

The activities of the EUBIROD Network include the design, maintenance and further development of novel products/deliverables, originally developed by the BIRO and EUBIROD project.