Activities conducted in collaboration
with international organizations

Partners of the EUBIROD network have been collaborating with high level international organizations since the early start of the program. The activities initiated with the BIRO project and then continued throughout EUBIROD and BRIDGE Health, attracting the interest of other organizations. These participations highlighted the areas of use and new directions for the further development of our methodology.

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 has been strictly collaborating with the European Union, particularly within 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 in support of the EU health information system was witnessed by the Foreword to the BIRO monograph authored by Nick Fahy, Head of DG-SANCO Unit of Health Information.

In 2012, the relevance of EUBIROD was officially commended by the EU, with the invitation 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 forthcoming workplan of Bridge Health, towards the definition of a European Research Infrastructure Centre (ERIC) on Health Information.

Between 2015-2019, while several EU initiatives proposed federated data networks in a similar way, we worked at Bridge Health to cement the collaboration towards a very tangible goal, anchored to the delivery of statistical indicators on diabetes and its complications.

In 2019, the EUBIROD Network continues to strive to support the EU through its own strategy for a sustainable European Diabetes Register.

The EUBIROD Network regards the International Diabetes Federation (IDF) as a fundamental allied partner.

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 will be 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.

During the last decade, based upon the results shown by EUBIROD in the field of diabetes, our Network was invited by other Consortia to participate to relevant EU initiatives in the fields of registers and chronic diseases, which were variously supported by DG-SANCO. These initiatives 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, or the CHRODIS Policy Brief for the management of national diabetes plans (see among outputs).

In 2018, key partners from the EUBIROD networks 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 PhD students hosted by the University of Surrey will work on amputation rates in diabetes, drawing upon the results obtained by the collaboration between EUBIROD and the OECD. The program will involve carrying out international comparisons in England, with secondments planeed at the University of Dundee, Scotland and the Aalborg University, Denmark. The model will contribute to the development of a targeted algorithm for the calculation of indicators, which could be later implemented in the BIRO software. The workplan of the PhD theses includes the possibility to test the results on other sites of the EUBIROD Network.

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

Quality measurement in Diabetes

In October 2010, we exchanged information with representatives of the OECD on new ways to measure quality, resulting into a specific mention of BIRO as a 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", still influential on policy initiatives in Europe.

In 2014, a coalition composed by officers of the Italian Ministry of Health and the EUBIROD Network took charge of 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 2019, a scientific paper was submitted to discuss in detail the results on amputations 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 for a volume published in 2013, where BIRO was mentioned as a solution to compare diabetes outcomes within a multi-country privacy enhanced infrastructure.

Consideration on the consequences of the new EU General Data Protection Regulation (GDPR) on these strategies led to the production of a scientific paper in 2014.

Between 2014-2016, the collaboration intensified with the productive participation to the Advisory Board of the Health Information Infrastructure, leading to the conduction of an international survey and the organization 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 primary output of the workshop was a milestone publication, to which EUBIROD contributed by providing input on guidelines for health data governance, based on the principles assessed in the EUBIROD paper on 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 helped delivering a comprehensive approach of Privacy and Performance Assessment, whose contents will be presented in a scientific paper submitted in 2019.

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 was searching for 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 and finally successfully implemented as a two-step method for Global Hospital Performance Benchmarking.

The EUBIROD Network participated to selected 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