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ACTIVITIES

B.I.R.O. WORKPLAN

  • The B.I.R.O. project is an international collaboration between innovative partners that are involved in defining and applying common rules for the development of a Shared European Diabetes Information System (SEDIS).  

  • The workplan starts from an accurate review of the best information available from research and policy, to identify target indicators and data required to populate European Diabetes Reports. Development of the system requires the application of advanced statistical methods that can work effectively even through the exchange of small amounts of aggregated data. This solution will allow partner institutions to contribute to the reporting system through the application of a common data format and the use of standard statistical routines that can be similarly applied to produce the basic components of a European system.  

  • B.I.R.O. heavily relies on research conducted during the last years in clinical epidemiology and takes advantage from the statistical properties of multivariate models and meta-analytical methods. This means in practical terms that overall results from different areas can be obtained by running separate analyses in parallel and then averaging all partial results using appropriate mathematical formulas.

  • A region is not to be intended as an administrative jurisdiction, but rather as a geographical area where information on the progression of diabetes and quality of care provided is collected and stored systematically in a homogeneous way. The workplan does not require altering any routine data collection occurring at the regional level. The core SEDIS will work as an overarching decision support system that will connect the different levels of the regional health system to favour  informed decision making and clinical governance. 

  • The implementation of data processing techniques will be based on: 

    • a population-based approach: epidemiologic and performance indicators taking into account results obtained in a specific catchment area will represent a main target of the project 

    • great cooperation among primary data collectors: data format will need to be widely applied 

    • a knowledge integration design: the different components of the system will be connected and technology widely disseminated among partners

  • More details on the original B.I.R.O. workplan are available here: 


  The Data Model

  Workpackages

  References



DIARY OF ACTIVITIES

  • 30th September-3rd October 2009, GASTEIN, BIRO at the European Health Forum 2009

  • 2nd-4th May 2009, KUWAIT CITY, First BIRO Academy Residential Course


  • 25th May 2009, PERUGIA, Final BIRO conference

    • A press conference was organized to present the BIRO System, the work packages and the final results of the project to the clinical experts the health care professionals and the local authorities of the University of Perugia and Regione Umbria. The BIRO Monograph and other dissemination material were distributed.


  • May 2009
    D14.4 " BIRO Monograph" delivered (WP Leader: University of Perugia; public)




  • May 2009
    D11.1 "Web Portal Template " delivered (WP Leader: University of Bergen; public)
    D7.2 " Reports Template Update and XML Metadata Reports" delivered (WP Leader: University of Bergen; public)
    D2.2 "Clinical Review Update" delivered (WP Leader: Joanneum Research; public)
    D5.4 "Privacy Impact Assessment Step 4: Final Report" delivered (WP Leader: University of Perugia; public)

  • 7th May 2009, BRUSSELS

    • The BIRO System, the work packages and the final results of the project were officially presented to the European Commission (DG Research, SANCO and Public Health Executive Agency). The BIRO Monograph was distributed for the first time at this meeting.


  • April 2009
    D8.1 "Statistical Engine" delivered (WP Leader: University of Perugia; public)
    D14.1 "Web Report Base" delivered (WP Leader: University of Perugia; public)
    D12.1 "Technology Transfer Workshop" delivered (WP Leader: Paulescu Institute; private)

  • 15th-17th January 2009, BERGEN

    • Technical referents analysed all unresolved aspects in the development of the software, debugging it while loading different data sources and running its components. Deliverables were analysed to fit with the overall design, particularly data schemas. Different presentations of the results were considered, and the plan for the final delivery of the project agreed among partners.The Bergen meeting resulted to be the most practical session ever made, integrating all efforts towards the deployment of a compact product.

    • Updates to Common Dataset and Data Dictionary were discussed, mainly regarding geographical reference of regions and catchement areas and location of patients within different time intervals. All these updates were required for a better statistical calculation of BIRO indicators

    • An e-learning platform was presented as a means to disseminate results more widely; contents of the web portal were agreed, and a plan for the final monograph was made.

    • John Cooper and Magne Rekdal from NOKLUS (Norwegian Quality Improvement of Primary Care Laboratories) presented the clinical and technical features of the Norwegian Diabetes Registry which was released and installed for the first time in Stavanger in April 2008.

    • Because of its practical scope, the Bergen meeting was the perfect occasion to host the Technology Transfer Workshop leaded by the Romanian Partner of Paulescu Institute. The BIRO software was tested on Romanian, Maltese and Cypriot data allowing IT experts to correct problems related to the different data format.

    • David Whiting from IDF (International Diabetes Federation) offered a very interesting contribution to the meeting by presenting his activities, current IDF plans in developing countries and an overview of information systems for diabetic citizens currently in use.


  • 29th November 2008, BRUSSELS

    • The Brussels meeting allowed examining the progress status of all work packages and the major pitfalls/delays in the development of the software. The work plan was redefined considering the six months extension requested to the Commission.

    • The BIROBox was presented to the Consortium for the first time. BIROBox is a software tools which allows BIRO users to extract and process local data for BIRO purposes. It collects and integrates all technical works done during the project in a single, user friendly software tools.

    • The architecture of BIRO Central Engine was described to the Consortium. Details were provided regarding techical features of the software which allows the production of BIRO global reports based on statistical objects coming from the whole Consortium.

    • The overview of the existing clinical literature, done at the beginning of the Project, was updated to include the most recent achievements. New indicators were selected based on their ability to capture an important performance, their scientific soundness and their potential feasibility.


  • September 2008
    D5.3 "Privacy Impact Assessment Step 3" delivered (WP Leader: University of Perugia; public)

  • 20th April 2008, ROME

    • An overview of the complete BIRO architecture was presented. It can be logically split in two parts: the first relates to software tools that will run in each region to produce the Local Statistical Report while the second part refers to the set of software tools running both at the Local and Central Level, which are required to produce the Global statistical report.

    • Various practical aspects involved in the process of data manipulation were explained and live examples of the configuration and running of BIRO software tools has been presented. The consortium highlighted the importance of designing a GUI to simplify the overall application and integration of the BIRO local and central components and suggested producing written documentation that would explain partners how to extract data from their local database.

    • A draft of the directory structure for the complete BIRO environment was discussed. The structure describes how all the products of the BIRO Project are integrated (software, libraries, documents, data, statistical objects, reports, outputs).

    • Statistical objects were introduced to the Consortium. They represent the basic set of information required to be transmitted over the network to the BIRO Central server to carry out a global statistical analysis from multiple distributed centres. A document was delivered where, for each statistical object, is possible to get basic information about the main mathematical and statistical properties, the type of variables involved, the procedure implemented by the central engine to process it and the format of the overall statistical output.

    • The possible structure of BIRO web portal has been discussed. It will point the attention on statistical reports but also on the BIRO approach as a viable solution towards the construction of a European database. Some important features of BIRO should be highlighted: it is cheaper than any other solution; it does not interfere whit local data collection; it makes possible to collect relevant, consistent and comparable data; it makes possible the data exchange without violating privacy; it is generic and can be potentially applied to other illness than diabetes.

    • The step 3 of PIA process: "Privacy Analysis Report" was presented. Its goal is to examine the BIRO data flow in the context of applicable privacy policies and legislation and to identify any eventual privacy risks or vulnerabilities associated with the proposal. From the report it results that BIRO is perfectly compatible with all the major privacy norms, relevant legislation and international instruments applicable to the project and is in a very safe position with every kind of processing being planned.

    • A draft of a new paper on the Privacy Impact Assessment was presented. It wants to demonstrate that PIA is able to provide efficient health information systems and at the same time respect all privacy dimensions. The methodology adopted chooses a level of data aggregation that represents the best compromise between respect for privacy, information content and feasibility. The results section includes a description of the three alternative architectures identified, and that finally selected, "aggregation by group of patients". Conclusions demonstrate for the system to be feasible and legally robust at the international level.

  • January 2008
    D6.1 "Database Engine" delivered (WP Leader: University of Perugia; public)
    D9.1 "Communication Software" delivered (WP Leader: Joanneum Research; private)
    D13.2 "Technical Implementation Report Year 2" delivered (WP Leader: University of Perugia; private)
    D15.2 "Evaluation Report Year 2" delivered (WP Leader: University of Malta; private)

  • 3rd December 2007, ROME



    • An overview of the workplan for 2008 was presented. Among the various actions to be undertaken, an important aspect relates to the actual use of the BIRO software among participating sites. There are two aspects that should be taken into account to ensure the adoption of the approach: a) involvement of policy makers; b) participation of patient associations. These key categories of users may facilitate linking data analysis to the actual provision of health services.

    • The most recent developments at the Task Force of Major and Chronic Diseases was introduced. The Committee is organized by SANCO to ensure rapid communication between projects in the area of Morbidity and Mortality. Both BIRO and EUCID have been asked to coordinate the preparation of a Chapter of the Major and Chronic Diseases (MCD) report on diabetes.

    • The structure of the long-awaited complete application of the BIRO prototype was explained. A first run of both the database and statistical engines wes prepared for the occasion on top of Umbria data. An overview of the different components and technical steps required for the automatic construction of a common statistical report was presented.

    • The pilot implementation of the BIRO Communication Software was presented. Goal of this module is to send statistical objects from the Local BIRO system to the Central BIRO System in a secure and reliable way. An overview of the technology chosen to achieve the goal was given.

    • The new BIRO-EUBIROD brochure was presented. It now includes a shorter description of the objectives and dedicates more attention to the actual results, with a description of activities planned for EUBIROD.

    • The second BIRO newsletter, focused on the Malta and Graz meetings was shown. A third one, focused on the Cyprus meeting and the recent developments at the Task Force on Major and Chronic Diseases, was announced.


  • October 2007
    D4.1 "Data Dictionary" delivered (WP Leader: University of Dundee; public)
    D4.2 "XML Metadata Dictionary" delivered (WP Leader: University of Dundee; public)

  • September 2007
    D5.2 "Privacy Impact Assessment: Step 2" delivered (WP Leader: University of Perugia; public)

  • July 2007
    D7.1 "Report template" delivered (WP Leader: University of Bergen; public)

  • 23th - 26 th May 2007, LARNACA



    • The Cyprus Diabetes Association provided substantial support throughout the meeting, offering continued assistance to all participants, organizing a wonderful hospitality, and showing a genuine interest for the BIRO project. The plenary session was formally opened by the Chief Medical Officer, Ministry of Health of the Republic of Cyprus, Dr. Andreas Polynikis.

    • Leaders of the Larnaca Diabetes Centre announced that the BIRO collaboration, through an increased level of attention for diabetes outcomes, has triggered both the development of the Cyprus Diabetes Register and the organization of the first diabetes clinic on the island.

    • High-calibre BIRO independent evaluators Amanda Adler (Un.Cambridge and Un.Oxford, UK) and Fred Storms (CBO NL) offered the Consortium their valuable input, by presenting their views and detailed suggestions for the improvement of 2006 project deliverables in the areas WP2-WP3. Corrections agreed will be immediately included in forthcoming deliverables.

    • Data dictionary and exchange XML format (WP4) have been finalised for delivery (confirmed end August 2007). Structure and functionality of tools for data export have been discussed in relation to the use of the BIRO XML format. Issues of data transfer from XML document to the BIRO database, and the development of related specialised software, have been agreed, based on Castor software.

    • The Privacy Impact Assessment (WP5) Consensus Panel has been successfully conducted through the use of a questionnaire submitted to all participants. The a ctivity allowed to choose the best architecture for the BIRO framework. All results will be included in the forthcoming deliverable, expected September 2007.

    • The BIRO Diabetes Reports Template has been discussed in detail. A final document has been agreed and will be ready for publication August 2007. An example of the use of the statistical engine showed the basic functionalities of a complete working example, scheduled to be available end 2007.

    • Critical issues of data transfer from different geographical areas have been discussed in relation to the technological transfer oof the prototype to other regions. A planned expansion of the Consortium has been recently submitted to the attention of DG-SANCO.

    • Partners agreed that the project deserved to be widely published. Furthermore, original FP7 research proposals must be formulated to fully exploit the potential of the BIRO database for the benefit of European policy makers.

  • 26th - 27 th March 2007, DUNDEE

    • The meeting focused on three major topics: technical aspects, privacy impact and new EU applications

    • The data dictionary and a final draft of the BIRO XML Schema were presented for discussion. A database engine pilot application built on top of the Umbria database was introduced as the basis of a test application of the statistical engine. A plan for a pilot data analysis and the structure of aggregate tables required have been presented.

    • The facilitator of Privacy Impact Assessment (WP5) summarized the result of activities carried out so far, including a review of the literature, the identification of the main alternatives for the BIRO privacy architecture, the major implications of each option, and the future steps that will be required to evaluate the information flow.

    • A plan for a new tool for the secure transmission of data bundles from each partner to the central server and web portal has been presented by Joanneum Institute in the framework of activities of WP Communication Software.

    • Updates of the situation in Romania, Malta and Cyprus have been provided. Representatives from the Cyprus Ministry of Health reported that B.I.R.O. is having a major impact on the activation of the diabetes register across the island. After just one year from the start of the project Cyprus represents the first example of the use of the B.I.R.O. dataset as a European standard for data collection and systematic reporting of diabetes data.


  • January 2007
    D13.1 "Techincal Implementation Report Year 1" delivered (WP Leader: University of Perugia; private)


  • December 2006
    D3.1 "Common Dataset" delivered (WP Leader: University of Dundee; public)
    D5.1 "Preliminary Privacy Impact Assessment" delivered (WP Leader: University of Perugia; public)
    D15.1 "Evaluation year 1" delivered (WP Leader: University of Perugia; private)
    BIRO poster presented at IDF World Conference Cape Town, South Africa
    BIRO project presented at Task Force on Major and Chronic Diseases, DG-SANCO, Luxembourg


  • 29th September - 1 st October 2006, GRAZ

    • A new BIRO brochure and the BIRO website were presented to all partners.

    • The meeting allowed to refine and complete concepts associated to the data dictionary after the delivery of the clinical review.

    • The Graz meeting represented a turning point for the implementation of BIRO project. Firm steps for the construction of the system were undertaken.The meeting allowed to conduct a "requirement analysis" for the B.I.R.O data model and to define major software specifications as well as the prospective alternatives for the B.I.R.O architecture.

    • Partners have also discussed in detail the plan of the Privacy Impact Assessment (WP5). The principal aspect identified was the importance of raising the awareness of the problem of personal data protection that is still not highly regarded among researchers and data users. It was remarked that it is essential that the architecture and the Consortium are well prepared to move from one privacy policy to a more restrictive one, the latter being a likely scenario for the future European framework.


  • June 2006
    D2.1 "Clinical Review" delivered (WP Leader: Joanneum Research; public)


  • 30th May - 2nd June 2006, MALTA (1st B.I.R.O. Investigators' Meeting)



    • Partners revised the draft of the Deliverable "Clinical review” choosing best indicators to be included in the BIRO short list as target outputs of data analysis.

    • The Project Coordination Board defined the categories of BIRO users that are to be taken into account to drive te development of all BIRO templates and the associated web portal.

    • The Malta meeting included a special session on Technology Transfer. The dedicated workshop produced an overview of the current situation in Malta, Cyprus and Romania. The workshop allowed to specify he Technology Transfer Report Index that describes all the activities foreseen for the specific WP.

  • 6th - 7th March 2006, DUNDEE

    • The Consortium agreed that individual data can only be processed at the local level to produce aggregated tables that are shared to produce target indicators. The desired level of aggregation must be decided by the Consortium considering both technological and privacy protection issues. A common XML is going to be defined to harmonize information extracted from different sources.

    • Target diabetes indicators should be driven by a proper consideration of the different categories of BIRO users

    • Fred Storms from the EUDIP/EUCIP Consortia provided an overview of the projects, indicating their complementarity to the BIRO approach.


  • 5th December 2005, PERUGIA (Kick-off Meeting)

    • The meeting focused on the discussion of the workplan and allowed to agree all operational steps required to realize its major objectives.

    • Partners agreed to concentrate on the application of advanced statistical analysis on data systems that are already in place.

    • The meeting allowed to define the foundations of the BIRO infrastructure through a flexible Data Set and a Data Dictionary integrating all major diabetes indicators. Partners agreed that registries with varying levels of completeness will be connected through a common, simpler dataset.

  • 1st May 2005, ASSISI (Consortium Agreement Meeting)


      assisi meeting

    • Partners of the European BIRO project met for the first time in the occasion of the ISGIID Conference to discuss the workplan and how to best fit their role to the activities of the Consortium. The meeting was opened by Prof. Massi Benedetti who described the BIRO project as an optimal way for the Commission to get reliable and regularly updated information through independent data collection.

    • Primary objective of the meeting was to introduce each other by providing a presentation of partners' activities in the respective countries.

    • The major discussion focused on the construction of the BIRO data model, raising the issue of the compatibility of different registers and the way they could talk each other through the use of a common structure. The meeting allowed to define the content of the different workpackages and to assign responsibilities to each partner.

for further information - B.I.R.O. Coordination Centre : DIMI - University of Perugia - Via E. dal Pozzo, I-06126 Perugia - Italy
Tel: +39.075.5727627 Fax: +39.075.5727627 E-mail:biroeu@unipg.it