The Network

The EUBIROD Network is an informal and voluntary collaboration between signatory parties of a Memorandum of Understanding that determines scope and governance of the network. The Network includes advocates of the rights of people with diabetes, governmental/non governmental organizations, scientific societies, associations of health professionals and individual citizens.

Secretariat: Hub for International Health Research
http://www.hirs-research.eu

Chairman: Prof. Massimo Massi-Benedetti
E-mail: massi@hirs-research.eu

Scientific Coordinator: Prof. Fabrizio Carinci
E-mail: fabrizio.carinci@unibo.it

Members of the EUBIROD Network 2019

The following institutions are formal partners of the EUBIROD Network:

Country Institute Official Delegate
Austria Joanneum Research Peter Beck
Belgium Scientific Institute of Public Health Kris Doggen
IDF Europe Senhaz Karadeniz
Croatia National Institute of Public Health Tamara Polijicanin
University of Zagreb Željko Metelko
Cyprus Ministry of Health Vivie Traynor
Denmark Steno Diabetes Centre Peter Rossing
Hungary University of Debrecen Attila Nagy
Israel Ministry of Health Inbar Zucker
Italy Hub for International Health Research Massimo Massi Benedetti
Serectrix Concetta Tania Di Iorio
Latvia Centre for Disease Prevention and Control Anita Maurina
Malta University of Malta Joseph Azzopardi
Norway NOKLUS Karianne Loevaas
Poland Silesian University of Technology Joanna Polanska
Romania Telemedica Consulting Simion Pruna
Slovenia University of Ljubljana Natasa Bratina
Spain IDIBAPS Anna Novials
The Netherlands Foundation for Care Information Fred Storms
UK Scotland University of Dundee Scott Cunningham
UK England University of Surrey Simon de Lusignan

The following collaborating institutions participated to our meetings and are involved in our activities in various forms:

Country Institute Official Delegate
Finland THL Ilmo Keskimaki
Germany Robert Koch Institute Christa Scheidt-Nave
Ireland Adelaide Meath Hospital Gerard Boran
Luxembourg Luxembourg Hospital Carine de Beaufort
Sweden National Diabetes Register Soffia Gudbjörnsdottir

Terms of Reference

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.

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.

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.

The EUBIROD Network is managed using a structure made up of the following features:

GENERAL ASSEMBLY

All the EUBIROD Network partners are deemed to be members of the General Assembly.

The General Assembly is composed of one duly authorised representative of each Member of the Network. After having informed the others in writing, each Member has the right to replace its representative and/or to appoint a proxy, although it shall use all reasonable endeavours to maintain the continuity of its representation. Each representative has a deputy.

The General Assembly is chaired by the Co-ordinator's representative.

The General Assembly meets annually (also using electronic means if necessary).
However, it can be also convened, in principle, at the request of its chairman or at any other time (when necessary) at the request of one of the Parties.

Meetings are convened by the chairman with at least fifteen calendar days prior notice.
This notice shall be accompanied by an agenda. The agenda is proposed by the chairman.
The agenda is deemed to be accepted unless one Member notifies the chairman and the other Members in writing of additional points to the agenda, at the latest two working days before the date of the meeting. Minutes of the meetings of the General Assembly shall be transmitted to the Parties within thirty calendar days after the date of the meeting.
The minutes shall be considered as accepted by all Members if, within fifteen calendar days from receipt, no Member has objected in a traceable form to the chairman.

The General Assembly is responsible for the overall direction of the Network activities:
1. agreeing up on the proposals made by the Steering Committee for the allocation of the eventual Network activities budget, in case funds will be granted
2. making eventual proposals to the Members for the review and/or amendment of the terms of the mutual agreement, however excluding the entering into the Network of new Members
3. deciding upon the eventual change and exchange of activities between Members and propose respective amendments in the Network's work-programme
4. election of the Steering Committee

The General Assembly shall not deliberate and decide validly unless a majority (51%) of its members are present or represented and each member shall have one vote.

STEERING COMMITTEE

The composition of the Steering Committee for the Network shall reflect the Members' respective responsibilities in the Network and an appropriate balance of competencies and fields of activities, while staying at a count level compatible with effective decision-making processes.

The Steering Committee consists of a representative of the Coordinator and of representatives of the Network’ members, who shall be elected by the General Assembly at the first EUBIROD Network meeting according to the majority rule (51% of consortium members).
The composition of the Steering Committee, except for the Coordinator representative, could be possibly modified yearly upon agreement of the General Assembly employing the same voting rule.

Any Member of the Steering Committee may resign by delivering written notice to the chairman of the SC. Such resignation shall be effective upon receipt unless it is specified to be effective at some other time or upon the happening of some other event.
Any Member of the Steering Committee having resigned shall hold office until his successor shall have been appointed in accordance the present Section.

The Steering Committee shall be chaired by the Co-ordinator's representative.
The Steering Committee shall meet at least quarterly (also through electronic means), in principle at the request of its chairman or at any other time when necessary at the request of one of the Members of the Steering Commitee.

Meetings shall be convened by the chairman with at least fifteen calendar days prior notice. This notice shall be accompanied by an agenda.
The agenda shall be proposed by the chairman. The agenda shall be deemed to have been accepted unless one of the Members of the Steering Committee notifies the chairman and the other Members of the Steering Committee in writing of additional points to the agenda, at the latest two working days before the date of the meeting.

Minutes of the meetings of the Steering Committee shall be transmitted to the Members of the Steering Committee within thirty calendar days after the date of the meeting.
The minutes shall be considered as accepted if, within fifteen calendar days from receipt, no Member of the Steering Committee has objected in a traceable form to the chairman.
The agenda and the minutes of the meetings of the Steering Committee shall be transmitted by the chairman of the Steering Committee to all Members of the Network.
The agenda shall be transmitted at the latest two working days before the date of the meeting. The minutes shall be transmitted within 60 calendar days after the date of the meeting.

Any decision requiring a vote at a Steering Committee meeting must be identified as such on the pre-meeting agenda, unless there is unanimous agreement to vote on a decision at that meeting and the majority (51%) of Steering Committee members are present or represented.
However, any decision required or permitted to be taken by the Steering Committee may be taken in accordance with the above in meetings via teleconference and/ or via email; without a meeting with prior notice of at least seven days an d without a vote, if, in any such case, a consent in writing, setting forth the decision so taken, is signed by the SC members having not less than the minimum number of votes that would be necessary to take such decision at a meeting at which all SC members entitled to vote on such decision attended and were voting, and provided the consent has been delivered for signature to all Steering Committee members.


Governance

Massimo Massi Benedetti
President, Hub for International Health ReSearch (HIRS)

[massi@hirs-research.eu]

Specialist in Endocrinology and Internal Medicine. Senior Programmes Advisor, IDF, Brussels, Belgium. Formerly A/Prof Endocrinology, University of Perugia; President of the Schools of Podology and Nursing; Chair of the Co-ordination Office of the Umbria Reference Centre for Diabetes; Co-director of the WHO Collaborating Centre for Diabetes Care; Member of the National Committee of the Italian Ministry of Health for the National Plan on Diabetes; Scientific Director of the KFAS Dasman Centre for Treatment and Research in Diabetes, Kuwait; President of the IDF European Region and Vice-President Global; Chair Science Task Force IDF. He is author of about 350 publications and Member of scientific committees, Chairman, and Speaker in over 300 national/international meetings; Coordinator of EU-funded projects BIRO and EUBIROD; Associated partner of EURODIABETA; DIABCARD 1-4; DIABCARE 1-3; MFIT; DIABSTYLE 1-2; ADICOL; IMMIDIAB.
Tamara Poljicanin
Croatian National Institute of Public Health, Croatia
[tamara.poljicanin@hzjz.hr]


Tamara Poljičanin, MD, PhD, was born in Zagreb, Croatia, in 1973. She graduated from the School of Medicine, University of Zagreb, completed a Postgraduate Course in Biology, Physiology and Immunobiology, and Postgraduate Studies in Epidemiology. Dr. Poljičanin worked at the outpatient department of the Vuk Vrhovac University Clinic for Diabetes, participated in the development and implementation of diabetes registry and of the National Diabetes Program. She held the positions of the Head of the Department of Epidemiology and Registry, the Head of the National Registry of Persons with Diabetes, and the Head of the Epidemiology Unit of the Merkur Clinical Hospital. Since May 2012 Dr. Poljičanin has held the post of the Director of the Croatian National Institute of Public Health.
Inbar Zucker
The Israel Center for Disease Control, Israel

[inbar.zucker@moh.health.gov.il]

Dr Zucker graduated in 2000 from Sackler School of Medicine in Tel Aviv University Israel and specialized in public health and epidemiology. Since 2007 she works in The Israel Center for Disease Control (ICDC), Ministry of Health. From 2014 she directs the chronic disease research field In the ICDC. Within this position she head the national diabetes registry and the national stroke registry.
Concetta Tania Di Iorio, MPH
Legal Expert, Serectrix

[ct.diiorio@serectrix.eu]

Italian Australian, graduate in Law, University of Bologna, Italy (1993), Barrister (1995), Master in Public Health, Monash University, Melbourne, Australia (2003). Founder of Serectrix (2000). Expert in the field of privacy evaluation, with main interests in the international exchange of health information and the construction of privacy-enhanced health information systems. Consultant for the Regional Agency of the Tuscany Region in the field of frail elderly (2005); Evaluator for DG-RESEARCH, European Commission, in the ethical aspects of research projects; and the University of Perugia, Subcontractor, Leader of the workpackage “Privacy Impact Assessment” in the BIRO Project and Associated Partner, Task Leader of "Privacy Performance Assessment" in the EUBIROD project. Author of impact papers on the EU legislation on privacy in the European Journal of Public Health and the Journal of Medical Ethics, she is also collaborating with the OECD on the Strengthening Information Infrastructure Project. She also provides continuous legal advise to the HIRS for the management of the EUBIROD Network, and general advise to other research centres in the preparation and management of EU projects.
Joseph Azzopardi
University of Malta\

[bonstan2000@yahoo.co.uk]

Iztok Štotl, MD
University of Ljubljana, Slovenia

[iztok.stotl@guest.arnes.si]

Iztok Štotl is a medical doctor working in Department of Endocrinology, Diabetes and Metabolic Diseases at the University Medical Centre Ljubljana in Slovenia. He works in metabolic intensive care unit specialized for hyperglycaemic crises in adult patients and also in outpatient diabetes clinic. He is a member of clinical group for bariatric surgery in University Medical Centre Ljubljana. His main medical fields of interest are: critical limb ischemia in diabetic patients, prediabetes, prediction and prevention of diabetes, bariatric surgery, obesity and metabolism. He is the author of Slovenian clinical guidelines for management of patients with high risk for developing diabetes. He is a system administrator of research servers in his clinic and actively uses open source solutions for conducting clinical research and his clinic.
Scott Cunningham
University of Dundee, Scotland, UK

[scott.cunningham@nhs.net]

Scott is Technical Consultant at the University of Dundee and has fifteen years of experience in software architecture design, development and project management within healthcare. He is technical lead for NHS Scotland’s shared electronic record for diabetes: SCI Diabetes Collaboration (SCI-DC). This system has been hugely influential in the understanding of diabetes and received an award for “Excellence in Major Healthcare IT Development” at the eHealth Insider Awards in October 2011. Scott has an active research interest in the patient-focused aspects of Health Informatics and received Scottish Diabetes Group funding in 2007 for the development of the NHS Scotland diabetes information portal, My Diabetes My Way (www.mydiabetesmyway.scot.nhs.uk). It contains a novel electronic personal health record, allowing patients across Scotland direct access to their diabetes record. This initiative received “Best initiative supporting self-care” at the Quality in Care Diabetes awards in October 2013. Scott and his team have a track record of taking research development grants to the level of fully integrated national services.
Fabrizio Carinci
Adjunct Professor, University of Bologna, Italy

[fabrizio.carinci@unibo.it]

Adjunct Professor of Biostaistics and Methods and Tools in Health Statistics at the Deparment of Statistical Sciences, University of Bologna. Formerly Professor and Head of Health Systems and Policy at the School of Health Sciences, University of Surrey. Dr. (1964), Australian, Statistician, has worked for nearly 25 years at the interface of Biostatistics, Health Services Research & Policy and Information Technology. Laurea in Statistical and Economical Sciences, he has been principal investigator in research projects conducted in Europe and Australia, as well as a collaborator of high level institutions e.g. the European Commission, WHO Europe and the OECD. Currently Senior Consultant at the National Agency for Regional Health Services (AGENAS), Rome, Italy; Collaborator of the Italian Ministry of Health; Member of the Bureau of the OECD Health Care Quality Indicator Project; Senior Biostatistician, Serectrix, Pescara; Technical Coordinator of the EU-funded projects EUBIROD and BIRO, University of Perugia; Formerly Senior Officer at the Department of Health Policy, Italian Ministry of Health (2004); A/Prof, Director of the Centre for Health Systems Research, Monash University, Melbourne, Australia (2000-2003); Consultant Biostatistician, Harvard School of Public Health (1997); Head, Unit of Statistics and Information Systems, Consorzio Mario Negri Sud Italy (1992-2000). A proud author of the WHO Europe "Tallinn Charter" on "Health Systems for Health and Wealth" signed by 53 Member States, he has been a prolific designer/developer of statistical technology adopted by many public institutions and a regular author of peer reviewed papers, book chapters and health information reports.

Members of the Steering Committee of the EUBIROD were nominated by the 1st EUBIROD General Assembly, Guildford, Surrey, 23-24th August 2015.

The Steering Committee is responsible for:

  1. making proposals to the General Assembly:
    • for the allocation of resources that the Network will possibly grant for specific activities
    • for reviewing and proposing to the Members budget reallocations, and
    • for making proposals for the creation, modalities of use, management and release of funds
  2. agreeing on the plan for using and disseminating the Knowledge
  3. implementing the activities and tasks of the Network and deciding upon participation to international projects, data collection, relations with other institutions, licensing issues, publication policy and press releases by the Members with regard to the Network activities
  4. deciding upon the technical roadmaps with regard to the Network activities
  5. deciding upon measures in the framework of controls and audit procedures, if necessary, to ensure the effective day-to-day co-ordination and monitoring of the progress of the technical work affecting the Network activities as a whole
  6. follow-up of the Network activities
  7. deciding upon the entering into the Network of new Members

The Advisory Board provides expert advise and independent views on present and future directions to be undertaken by the Network. It is formed by a group of external experts and/or organizations' representatives including academics, policy makers and all relevant stakeholders.

The composition of the EUBIROD Network Advisory Board will be soon decided by the EUBIROD Steering Committee.

Massimo Massi Benedetti
President, Hub for International Health ReSearch (HIRS)

[massi@hirs-research.eu]

Specialist in Endocrinology and Internal Medicine. Senior Programmes Advisor, IDF, Brussels, Belgium. Formerly A/Prof Endocrinology, University of Perugia; President of the Schools of Podology and Nursing; Chair of the Co-ordination Office of the Umbria Reference Centre for Diabetes; Co-director of the WHO Collaborating Centre for Diabetes Care; Member of the National Committee of the Italian Ministry of Health for the National Plan on Diabetes; Scientific Director of the KFAS Dasman Centre for Treatment and Research in Diabetes, Kuwait; President of the IDF European Region and Vice-President Global; Chair Science Task Force IDF. He is author of about 350 publications and Member of scientific committees, Chairman, and Speaker in over 300 national/international meetings; Coordinator of EU-funded projects BIRO and EUBIROD; Associated partner of EURODIABETA; DIABCARD 1-4; DIABCARE 1-3; MFIT; DIABSTYLE 1-2; ADICOL; IMMIDIAB.
Concetta Tania Di Iorio, MPH
Legal Expert, Serectrix

[ct.diiorio@serectrix.eu]

Italian Australian, graduate in Law, University of Bologna, Italy (1993), Barrister (1995), Master in Public Health, Monash University, Melbourne, Australia (2003). Founder of Serectrix (2000). Expert in the field of privacy evaluation, with main interests in the international exchange of health information and the construction of privacy-enhanced health information systems. Consultant for the Regional Agency of the Tuscany Region in the field of frail elderly (2005); Evaluator for DG-RESEARCH, European Commission, in the ethical aspects of research projects; and the University of Perugia, Subcontractor, Leader of the workpackage “Privacy Impact Assessment” in the BIRO Project and Associated Partner, Task Leader of "Privacy Performance Assessment" in the EUBIROD project. Author of impact papers on the EU legislation on privacy in the European Journal of Public Health and the Journal of Medical Ethics, she is also collaborating with the OECD on the Strengthening Information Infrastructure Project. She also provides continuous legal advise to the HIRS for the management of the EUBIROD Network, and general advise to other research centres in the preparation and management of EU projects.
Fabrizio Carinci
Adjunct Professor, University of Bologna, Italy

[fabrizio.carinci@unibo.it]

Adjunct Professor of Biostaistics and Methods and Tools in Health Statistics at the Deparment of Statistical Sciences, University of Bologna. Formerly Professor and Head of Health Systems and Policy at the School of Health Sciences, University of Surrey. Dr. (1964), Australian, Statistician, has worked for nearly 25 years at the interface of Biostatistics, Health Services Research & Policy and Information Technology. Laurea in Statistical and Economical Sciences, he has been principal investigator in research projects conducted in Europe and Australia, as well as a collaborator of high level institutions e.g. the European Commission, WHO Europe and the OECD. Currently Senior Consultant at the National Agency for Regional Health Services (AGENAS), Rome, Italy; Collaborator of the Italian Ministry of Health; Member of the Bureau of the OECD Health Care Quality Indicator Project; Senior Biostatistician, Serectrix, Pescara; Technical Coordinator of the EU-funded projects EUBIROD and BIRO, University of Perugia; Formerly Senior Officer at the Department of Health Policy, Italian Ministry of Health (2004); A/Prof, Director of the Centre for Health Systems Research, Monash University, Melbourne, Australia (2000-2003); Consultant Biostatistician, Harvard School of Public Health (1997); Head, Unit of Statistics and Information Systems, Consorzio Mario Negri Sud Italy (1992-2000). A proud author of the WHO Europe "Tallinn Charter" on "Health Systems for Health and Wealth" signed by 53 Member States, he has been a prolific designer/developer of statistical technology adopted by many public institutions and a regular author of peer reviewed papers, book chapters and health information reports.

The not for profit nongovernmental organization “Hub for international Health ReSearch HIRS” based in Perugia (Italy) agrees to maintain the coordination and the secretariat of the EUBIROD Network as a primary role of its activity according to the rules mutually agreed, being its general scope “to promote and sustain the study, research and education in all areas of health, with a particular focus on non communicable chronic diseases (NCDs)”.
Consistently with its name and in line with the goals of the EUBIROD Network, the HIRS acts as a catalyst for people and organizations who can pursue public health improvement through coordination of international initiatives.

According to mutually agreed rules, HIRS has the following duties and responsibilities:

  • to ensure the fair dissemination of any relevant information among all partners of the Network, as well as the proper maintenance and respect of the rules included in the Statute
  • to act as a coordinator, secretariat and principle contact point in any granted international project, being responsible for the efficient management of the implementation plan and a driver of successful achievement of common goals
  • to manage all operational aspects of the Network, including e.g: the organization of meetings, the agenda, timing, venues/teleconferences, minutes, and the collection of any relevant background material e.g. room documents, references, internal drafts/newsletters etc
  • to entertain public relations on behalf of the EUBIROD Network and pursue any potential funding opportunity that would secure a continued level of support for its activities
  • to officially represent the EUBIROD Network at all international events, whenever considered appropriate
  • to manage the budget of any funding secured on behalf of the Network, in accordance with the objectives and work program agreed in the specific case
  • to manage and safeguard the image, copyright, licensing scheme, maintenance, use and regular update of products managed by the EUBIROD Network, including: the EUBIROD website (www.eubirod.eu), the BIRO project website (www.biro-project.eu), the BIRO System, the Meta-Registry of Diabetes Sources, the BIRO Data Standards, the BIRO Academy and the EUBIROD e-learning platform
  • to coordinate the editorial activity, ensuring the respect of all rules and guidelines set by the editorial board, supervising all phases in the preparation and dissemination of reports, newsletters etc
  • to monitor the application of the present statute and duly inform the Steering Committee of any deviation or violations by any member of the EUBIROD Network
The Coordinator, who chairs both the General Assembly and the Steering Committee, is in charge of the coordination and secretariat of the EUBIROD Network and fulfils the following general functions:
  1. administration, preparation of minutes and provision of the meetings of the General Assembly and of the Steering Committee, and follow-up of its decisions;
  2. transmission of any document and information connected with the Network between the Parties concerned; and
  3. administration of funds relative to the operational capacity and maintenance of the Network.
    Except for the capacity as representative of the Parties agreed between the partners, the Coordinator is not entitled to act or to make legally binding declarations on behalf of any Member of the network.