5.4.7. Future developments

It is necessary to translate existing political commitments, declarations and conclusions into tangible political actions. Diabetes is a complex health problem, requiring multi-disciplinary approaches that range from health promotion and prevention to screening, diagnosis, treatment and care. Diabetes, like other chronic diseases, needs a long-term vision and a short-term strategic approach – measuring outcomes continuously and not just meeting targets at set dates. The elements of this strategy also apply to other disease areas, particularly chronic diseases although no one fits all other approaches. The key elements of the EU Strategy should include all aspects listed in table 5.4.5, which are highly related to the ability to report the disease in a timely manner. However, obtaining more reliable diabetes information is not only a matter of measurement  but also of regular measurement made in a sustainable way all around the EU. The most natural direction for this would be to strengthen collaborative projects funded by the European Commission. In the field of diabetes, two stream of projects are particularly relevant:

·       EUDIP, with its sequel EUCID, which, as shown before in this chapter, have paved the ground for the definition of a set of realistic and agreed measurement targets

·       BIRO, with the upcoming initiative EUBIROD, which propose a way to implement a system devolving the responsibility for the automatic collection of standardised information within the European regions

The “Best Information through Regional Outcomes” (BIRO) project is worth to be seen in detail, as it offers an innovative solution to automated standardized data collection by developing a collaboration among regional diabetes registers. The goal of the project is to build “a common European infrastructure for standardized information exchange in diabetes care, for monitoring, updating and disseminating evidence on the application and clinical effectiveness of best practice guidelines on a regular basis”. BIRO exploits work autonomously undertaken by regions, where a “region” is not purely intended as an administrative entity, but as a network collecting health information according to a homogeneous and well defined set of standardized rules. This definition can eventually identify a geographical region, or even a country (typically a smaller State e.g. Malta, Cyprus etc), but in a broad sense, a “BIRO region” can also be a group of clinicians joining a disease management program or an epidemiological study, that can all contribute with information to be submitted into the EU portal.

Once realised (May 2009), specialised software will allow the EU web portal to directly tap into a server that will capture the most updated parameters delivered directly by regional diabetes registers, based upon fully documented methods and standardised criteria (reports available at www.biro-project.eu). Although individual data will never be exchanged over the network, the issue of privacy protection, an increasing barrier for data systems, has been thoroughly explored through a “Privacy Impact Assessment” that has involved all participating regions.

BIRO and EUCID Consortia have decided to merge into a common initiative, “European Best Information through Regional Outcomes in Diabetes” (EUBIROD), started on 1^st September 2009. the aim of the project is to spread the use of the BIRO system to produce online indicators, including the EUCID shortlist, from regions belonging to 20 EU Member States. EUBIROD will allow to automatically populate a EU Report that will be based on the BIRO template and will include the following range of measures:

·       demographic characteristics (age, gender);

·       clinical characteristics (diabetes status, risk factors e.g. obesity, lifestyle, clinical measurements, diabetes complications);

·       health system (structures, structural quality, processes, measurement done, treatment, management);

·       population (area level); and

·       risk-adjusted indicators (epidemiology, process quality, intermediate and terminal outcomes).

While, the question about the validity and accuracy of data residing in individual regions/states cannot be easily solved from the wider perspective of the European Union, there is a need for specific training and involvement of health professionals that represent the primary units for coding and registration. Efforts to achieve this goal must be agreed upon both locally and at continental level.

Approaches proposed by European projects may be useful in providing standardised criteria and integration in order to converge towards the definition of a common infrastructure. However, they cannot directly expand or improve surveillance at local level. As a matter of fact, it will never be possible to collate complete information on diabetes without a significant investment straight into the clinical setting, where the diabetic patient is met and where there is the opportunity to monitor the status and the progression of the disease.