Why EUBIROD?

Recent studies alarm the whole society to respond to a problem that has been described as a "global epidemics", and for which the major public health measures, including primary and secondary prevention, have failed to deliver an effective reduction of adverse outcomes.

Over 25 million people are known to be affected by diabetic disease, and that at least the same number corresponds to undiagnosed cases. Moreover, the predicted increase by 2025 equals 16%, mostly attributable to the growing prevalence of type 2 diabetes among children. The impact of diabetes complications threatens health systems investing between 5% and 10% of the total health expenditure to provide care for the diabetic population.

EUBIROD represented the practical way to implement BIRO at the continental level and a unique solution to fulfil the "Vienna Declaration on Diabetes" (February 2006) long term and homogeneously within and across Member States. The Declaration requested to:

• improve data collection across the EU;
• create a permanent forum for the exchange of best practice on diabetes.

EUBIROD addressed essential priorities identified by the Declaration of the European Parliament of the 19th of April 2006, by:

• prioritising diabetes in the EU's new health strategy as a major burden across the EU
• encouraging Member States to establish National Diabetes Plans
• developing an EU diabetes strategy

In addition, EUBIROD offered a clear and consistent strategy to fulfil the objectives included in the set of Conclusions on the Promotion of Healthy Lifestyles and Prevention of Type 2 diabetes, in particular:

• Member States "...to consider...:
  • ...Collection, registration, monitoring and reporting at national level of comprehensive diabetes epidemiological and economic data as well as data on the underlying factors;
  • ...an evaluation system with measurable targets to track health outcomes and cost-effectiveness, taking into account Member States' organisation and delivery of their respective health services..."

• European Commission "...to support...:
  • ...encouraging networking and the exchange of information between Member States with a view to promoting best practice... and high-risk groups and to reducing inequalities and optimising healthcare resources;
  • ...examining and strengthening the comparability of diabetes epidemiological evidence by considering the establishment of standardised outputs for monitoring, surveillance and reporting of diabetes mortality, morbidity and risk factor data across Member States"

With respect to the Programme of Community Action in the Field of Health, EUBIROD project covered Priority 1. "Health Information", Action 2.1 "Operating the Health Information and knowledge system", addressing the "creation or improvement of morbidity registers covering all Member States on major and chronic diseases (including feasibility and costing) for which a solid indicators base definition exists (this is the case for diabetes etc)".

Health information is essential to ensure correct functioning of modern health systems. Nevertheless health services information is frequently hidden, fragmented, dispersed, under-utilized, poorly summarized, and undervalued. Despite the large amount of data and reports available, current information on diabetes is scattered and fails to offer a strategic insight to halt such progression at the European level.

The proposed action has established a fully functional European information network in the field of diabetes. EUBIROD allowed a sustainable approach to:

• exploit the analytical capabilities of securely linking data directly from their point of collection (health care services, administrative registers,...)

• facilitate information exchange on aggregate values in order to protect data from any threat to individual privacy

• collect diabetes information from a large and expanding number of European regions/countries

• connect public health information to the routine delivery of health services, comparing results across different systems/settings where the target population can be tracked on an everyday basis

• develop a flexible platform for the exchange of best practice through a collaborative activity that will include remote training and shared development (the "BIRO Academy")

• routinely release in-depth statistical reports for Europe, including all major diabetes indicators and ensuring that data sources are well standardized and comparable

• compare quality of care and outcomes against a European standard, average, or specific system of care

• base national programmes for diabetes on a more solid standardized information base.

EUBIROD took into account the social, cultural and policy context of target groups by structuring its products in a way that they can be presented to the different stakeholders, representing own values and needs:

• European institutions and policy makers request reports that can be rapidly interpreted to support informed decisions. EUBIROD will provide qualitycontrolled estimates based on statistical techniques taking into account potential confounding effects.

• Academics require more detailed information to investigate problems e.g. determinants of the variability in quality of care and the role of socio-economic components in predicting health outcomes.

• Clinicians need to know more about the quality of care delivered, with a level of detail that is frequently absent from country reports. They do also require more flexible and customised information e.g. reports that EUBIROD can dynamically deliver by exploiting its direct access to the database

• Citizens, in particular associations of diabetic patients, are particularly sensitive to the conduct of applied projects such as EUBIROD.

Several EU projects approached the problem of tracking diabetic patients to monitor and control the disease and related complications. The Diabcare series introduced the idea of routine data collection to European policymakers in the 90s.

Inspired by a more pragmatic approach, DG-SANCO funded the ECHI and EUDIP projects to identify a short list of community and diabetes indicators that could be delivered by all Member States. The EUCID project will now "put diabetes on the European map" by populating the matrix of core national indicators.

The BIRO project linked regional registers to share knowledge and data standards with a finer control on quality and estimation. By incorporating all major indicators released in ECHI and EUDIP, BIRO allows monitoring diabetes and health services provided.

The EUBIROD project carries the approach to the next level, reaching a wider audience, training partners from many Member States, Acceding/Candidate Countries, and EFTA Countries, and implementing a solution for the birth of a European Diabetes Register.

EUBIROD provided Public Health with the level of detail required to support cautious decisions on top of comparable and interpretable information.