EUROPEAN BEST INFORMATION THROUGH REGIONAL OUTCOMES IN DIABETES
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.
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:
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
agreeing on the plan for using and disseminating the Knowledge
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
deciding upon the technical roadmaps with regard to the Network activities
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
follow-up of the Network activities
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:
administration, preparation of minutes and provision of the meetings of the
General Assembly and of the Steering Committee, and follow-up of its decisions;
transmission of any document and information connected with the Network between the Parties
concerned; and
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.
