Enough data on chronic diseases in the EU?

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The European Union examines the situation about the current status of EU-wide, comparable data available about chronic conditions from time to time. A publication in 2012 [1] stated that the availability of  timely and  comparable chronic disease prevalence data is far from ideal in the European Union. Initial findings included:

  • For some diseases (e.g. multiple sclerosis, Parkinson’s disease, diabetes) a wealth of data exists. However, being these data originating from a great variety of national studies, they are still far from being comparable.
  • Availability of the data is not equally distributed among countries and this leads to large ‘health information inequalities’ within the EU 27. Data availability is generally better in the ‘old’ EU15 countries and worse in the countries that became EU member in 2004 or later.
  • The available information on the prevalence of chronic diseases is scattered among several reports, (project) websites, research articles and international databases, with generally only the latter being a source with some form of sustainability.

The most important sources of data on the prevalence of chronic disease in terms of coverage and timely availability are:

  1. General health interview surveys (EHIS and national HIS);
  2. Registries (e.g. hospital discharge registers, GP registers, disease registers; data  collected by the Eurostat morbidity statistics pilot);
  3. Epidemiological (population-based) studies using (diagnostic) interviews, physical exams or both (including HES).  In addition, health examination surveys (HES) provide information on the determinants of  major chronic diseases (e.g. blood pressure, BMI, and cholesterol) or undiagnosed diabetes.

Because disease registers, HIS and HES activities are expensive, it is worthwhile to further stimulate the use of existing routinely collected data as done by the Eurostat morbidity pilot and develop protocols to arrive at optimal comparability for such datasets.

Part of this process of improving data is creating more possibilities for record linkage among the different sources of information. Due to data protection legislation, this linkage is still not possible in several countries. The  EU legislative data protection framework was currently being revised – time will tell if it could help to improve the situation.

European experts and decision makers also suggested to set up a web-based chronic disease monitoring system, which could be a way to improve the scattered data situation. Such a web-based system could be envisaged by integrating available information may improve data access and visibility and its usability for public health professionals and policy makers and could thereby also  provide an opportunity to increase Member States’ commitment.

The situation is improving slowly, despite the fact that  Big Data technologies and ’data accessed everywhere’ innovations could now make it possible to aggregate, link and analyse data within the European Union to provide better support services and gradually improve quality of treatment and social support services.

On individual level, new data tecnologies and solutions could help to measure more often and more accurately, as well as to feedback more often and more accurately: to the patient, the caregivers as well as to medical professionals, supporting both patient empowerment and therapy adherence. ICT4Life project is part of this initiative, based on monitoring, information sharing, feedback and patient empowerment.

However, sustainable investments in improving data availability, comparability and quality cannot be achieved without the commitment of the Member States and some central form of coordination, being part of a common European health information strategy.

[1] Information, indicators and data on the prevalence of chronic diseases in the European Union, available here.

Author:

NETIS

www.netis.hu

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