1st Annual EUBIROD meeting Dasman Center for Research and Treatment of Diabetes, Kuwait City Kuwait City, Kuwait, 2nd-4th May 2009

Discussion on Theme 2: the BIRO System

First BIRO Academy Residential Course, Kuwait City, Kuwait, 2nd May 2009

Dr.Fred Storms open the discussion by stating that the flow or information in BIRO may be considered bidirectional: the system collects data, but can also receive questions, to allow users to interact with the central engine. According to Dr.Concetta Tania Di Iorio, this development is possible but may cast questions on security and data protection, albeit data travel in aggregated form. However, the level of security ensured by BIRO is high enough to plan this feature. For Fabrizio Carinci, the option can be developed in EUBIROD. Some partners asked for customized benchmarking, but that must be discussed to understand whether it is proper for the scope of BIRO.

Prof.Joseph Azzopardi asks whether BIRO complied with local legislation in all countries, to make sure that the system can be actually operated by all partners: the EU Directive may pose specific problems in different countries. Tania answers that a questionnaire was submitted to all partners to better understand the situation locally. However, in the BIRO process, as a result of the privacy impact assessment, the transfer of aggregate data should not impede international data exchange. Nevertheless, the situation must be better explored in the framework of EUBIROD, with more attention to the management of registers on a per case basis.

As far as the technology is concerned, Valentina Baglioni remarks that the BIRO structure may be replicated in other countries in a recursive fashion. All software may be adapted to the particular needs at a national level. That means that the central engine can be installed at a national coordinating centre, linking regions that use the local engine to produce reports and send aggregate data for national indicators.

Dr. Carine de Beaufort, specialist in pediatric diabetes from Luxembourg, asks about the relationship between the BIRO server and EUROSTAT. According to Fabrizio, this topic must be discussed with SANCO and EAHC, since there are many overlapping initiatives and it does not seem so simple to work with the EU statistical system on a routine basis in a BIRO fashion. The whole issue is about sustainability, i.e. whether it is possible to establish a continuous flow between institutions and projects. Some innovative approaches supported by the EC e.g. EUPHIX exist but have an unclear future. By the way, the BIRO Consortium would be keen to discuss options in Brussels.

Dr.Christian Awaraji, a researcher from Dasman, warns the Consortium that the confusion between anonymization and aggregate data must be avoided, and that it should be clear that only aggregate tables are sent to the server.

Dr.Michael Jecht, diabetologist from Havelhöhe, Berlin, remarks that if BIRO will be used to publish results on local data in local journals, rather than only been sent to a central server, then it would be perceived very positively as a useful tool for clinicians. According to Fabrizio, due to the innovative design of BIRO, this situation is entirely possible. The software can be used for own purposes, so with some additional resources language can be changed, application can be adapted, and local needs become a direct target of BIRO.

In relation to the data server and web portal, Dr.Christian Awaraji asks who will responsible for data transfer to the server. Fabrizio informs that it needs to be clarified. For Storms, the central server should be in Perugia and allow benchmarking across countries/regions. For Fabrizio, the development of EUBIROD may include that option, since it can boost the collaboration for many different reasons. For Samuelsen, the actual organization of the web portal is a topic that needs to be discussed with great attention.