Activities carried out in collaboration
with international organizations

Partners of the EUBIROD network collaborate with high level international organizations since its initial inception. Activities started with the BIRO project and continued through the projects EUBIROD and BRIDGE Health, raising the interest of multiple organizations. The range of international collaborations continues to expand, inspiring further development of our methods and tools.

In the following sections we provide a brief introduction to the scope and content of collaborations undertaken during the last 15 years:

Since 2005, EUBIROD collaborated intensely with the European Union, starting from programs run by the Public Health Unit of Health Information at DG-SANCO.

In 2008, in strict collaboration with the Coordinator of the EUCID project, we contributed to the preparation of the EU Report on Major anc Chronic Diseases, producing a specific chapter on diabetes. The report remains a milestone of the European Union in an area e.g. NCD indicators that is still largely neglected and under developed, after over twenty years of sponsored projects.

In 2009, the supportive role played by the EUBIROD network was formally acknowledged by the Head of DG-SANCO Unit of Health Information, Nick Fahy, in his Foreword to the BIRO monograph.

In 2012, the relevance of EUBIROD was officially commended by the EU, when it was invited to present at the High level Conference "EU Health Programmes: results and future perspectives" and the inclusion of the project among the 33 most successful EU projects in the field of health.

In 2015, EUBIROD contributed to the preparation of a Scoping Paper on Health Information (2015) paving the way for the definition of a European Research Infrastructure Centre (ERIC) on Health Information.

Between 2015-2019, in Bridge Health we reshaped our tools for the delivery of statistical indicators on diabetes and its complications.

Between 2019-2022, the EUBIROD Network continued to support the EU through collaboration with offices and participation to meetings, towards the creation of the European Health Data Space.

The International Diabetes Federation (IDF) is a key partner of the EUBIROD Network.

Between 2008-2012, IDF International has been a formal partner of the EUBIROD project. In september 2009, EUBIROD contributed to the conduction of a systematic review on multinational comparisons on quality and outcomes in diabetes, highlighting the relevance of EUBIROD to expand the coverage of the IDF Diabetes Atlas. The IDF provided an important contribution to the EUBIROD project by hosting a memorable residential course of the BIRO Academy in Brussels, Belgium. Representatives from Barbados, Cuba, China and Tanzania participated to an educational session, introduced by John Dalli, EU Commissioner for Health.

In 2015, IDF Europe officially joined the EUBIROD Network by signing the Memorandum of Understanding.

In 2017, the Chairman of EUBIROD organized a special session on "Diabetes in Society and Culture" at the IDF World Conference 2017, Abu Dhabi, United Arab Emirates. Members of the EUBIROD Secretariat aspects of the BIRO approach related to ethical aspects and the statistical system.

In 2019, the EUBIROD Network reinfored the partnership with WHO Europe to the aim of establishing a European Diabetes Register, using state of the art diabetes registers participating to Bridge Health.

This activity has been presented at the IDF Europe EASD 2019 Symposium, during the session entitled "From 2011 to 2019: a critical look to the achievements of NCD agenda for the diabetes community in Europe", to be held in Barcellona on the 16th September 2019, 10:00 - 12:30, Pinos Hall.

In 2017, EUBIROD coordinators embarked into a global revision of the standard set of measures for diabetes conducted by ICHOM. The ICHOM Diabetes Working Group used much of the knowledge acquired by the data dictionary developed in EUBIROD to select measures that were finally recommended for implementation worldwide.

After 18 months of hard work by a group of leading physicians, measurement experts and patients, we released the ICHOM Standard Set for Adults with Type 1 and 2 Diabetes (December 2018). The reference guide provided users with a direct opportunity to exploit the BIRO software and use the data infrastructure offered by the EUBIROD coalition of diabetes registers, to benchmark results in Europe and beyond.

ICHOM recommended to collect and compare outcomes that matter most to persons with Diabetes, using these measures to better understand and improve the lives of their patients globally. Three standardized Patient Reported Outcome Measures (PROMs) were suggested for the scope: WHO-5, PAID and PHQ-9.

We have collaborated with various Consortia in activities carried out to support the production of better health information for chronic diseases. Activities included the Joint Action on Disease Registers PARENT (2015) and the Joint Action on Chronic Diseases CHRODIS (2017).

Different members of the Network participated to the activities of these Consortia, contributing to the production of platforms e.g. the PARENT Registry of Registries (drawing interesting lessons from the experience of the EUBIROD Meta-Registry) and its Guidelines for the establishment of Disease Registers, and the CHRODIS Policy Brief for the management of national diabetes plans (see among outputs).

In 2018, key partners of the EUBIROD network officially entered the Marie-Curie Innovative Training Network HEALTHPROS for a "New Generation of Health Professionals", coordinated by the University of Amsterdam.

Between 2019-2022, two research fellows hosted at the University of Oxford have worked on studies on amputation rates in diabetes. The model has contributed to the development of targeted methods for the automated data extraction and modelling of clinical databases for policy recommendations.

The EUBIROD Network has collaborated in various initiatives led by the OECD Health Division.

Quality measurement in Diabetes

In October 2010, we liaised with OECD expert groups to present the BIRO approach as best practice to standardise data exchange for quality measurement.

In 2012, the OECD invited EUBIROD to present at the European Diabetes Leadership Forum 2012, held in Copenhagen in collaboration with WHO Europe and Novo Nordisk . The Conference led to the "Copenhagen Roadmap", a document that was used to drive new policy initiatives in Europe.

In 2014, a collaboration between officers of the Italian Ministry of Health and the EUBIROD Network delivered a small R&D project to revise the standardised definitions of Lower Extremity Amputation in Diabetes.
In 2015, following approval of the Expert Group on Health Care Quality Indicators , the new definitions were implemented for the regular publication of Lower Extremity Amputation Rates in Diabetes in Health at a Glance.
In 2020, a scientific paper presented the details of amputation rates obtained using the new OECD standardized definitions.

Health data governance

The relevance of EUBIROD for health data governance was another element of interest for the OECD. Members of the Secretariat contributed intensely to the work undertaken on information infrastructure.

The first contribution was a chapter in a volume published in 2013, where BIRO was mentioned as a solution to compare diabetes outcomes within a multi-country privacy enhanced infrastructure.

A debate on the consequences of the new EU General Data Protection Regulation (GDPR) for international comparisons led to the production of a scientific paper in 2014.

Between 2014-2016, the collaboration continued with the productive participation to the Advisory Board of the Health Information Infrastructure, an expert group contributing to a specialised monograph emerging from the materials of a key Workshop on Health Data Governance hosted at OECD Headquarters. Participants included national privacy authorities, academics, industrial representatives and members of the EUBIROD Secretariat in the roles of Moderator and Panelist.

The publication resulting from the workshop was a milestone volume, in which EUBIROD provided input for new guidelines for health data governance, based on the principles of privacy perfomance assessment. The report paved the ground for the final Recommendations on Health Data Governance delivered at the OECD Ministerial Conference in January 2017.

In June 2017, as a part of the Bridge Health project, colleagues already involved in the OECD Advisory Board participated to a Workshop Meeting held in Nicosia, Cyprus . The workshop delivered comprehensive approach of Privacy and Performance Assessment, whose contents have been published in a scientific paper in 2020.

Methodology for international data collection

The BIRO approach provided valuable input to new forms of international data collection at the OECD.

In 2015, the OECD strived to identify a privacy enhanced solution to collect international data at sub-national level to measure hospital performance benchmarking.
To receive advise on a complex matter, colleagues of the Health Division organized an Expert Meeting hosted by the University of Surrey involving referents from relevant international projects, including EUBIROD.
In that occasion, F.Carinci presented a revised form of the BIRO approach as a solution for the OECD data collection .

In 2016, the idea was taken up by the OECD with the implementation of a two-step method that allowed to deliver a report on Global Hospital Performance Benchmarking.

The EUBIROD Network participated in various occasions to the activities coordinated by WHO Europe.

In 2012, EUBIROD participated to the Workshop on Diabetes and Health Systems at the European Diabetes Leadership Forum in Copenhagen.

In 2013, EUBIROD participated to the Follow-up meeting of the Tallinn Charter, for a workshop on "Using eHealth to improve health systems performance". The contribution of EUBIROD to the meeting is available here