Abstract
BackgroundResearch networks offer multidisciplinary expertise and promote information exchange between researchers across Europe. They are essential for the European Union’s (EU) health information system as providers of health information and data. The aim of this mapping exercise was to identify and analyze EU research networks in terms of health data collection methods, quality assessment, availability and accessibility procedures.MethodsA web-based search was performed to identify EU research networks that are not part of international organizations (e.g., WHO-Europe, OECD) and are involved in collection of data for health monitoring or health system performance assessment. General characteristics of the research networks (e.g., data sources, representativeness), quality assessment procedures, availability and accessibility of health data were collected through an ad hoc extraction form.ResultsFifty-seven research networks, representative at national, international or regional level, were identified. In these networks, data are mainly collected through administrative sources, health surveys and cohort studies. Over 70% of networks provide information on quality assessment of their data collection procedures. Most networks share macrodata through articles and reports, while microdata are available from ten networks. A request for data access is required by 14 networks, of which three apply a financial charge. Few networks share data with other research networks (8/49) or specify the metadata-reporting standards used for data description (9/49).ConclusionsImproving health information and availability of high quality data is a priority in Europe. Research networks could play a major role in tackling health data and information inequalities by enhancing quality, availability, and accessibility of health data and data sharing across European networks.
Highlights
Research networks offer multidisciplinary expertise and promote information exchange between researchers across Europe
About 70% of data provided by the Research networks (RNs) is reusable, the lack of transparency in data collection procedures and analysis observed are critical issues for the health information systems in European Union (EU)
The critical issues related to data quality, availability, accessibility and data sharing underlined by the current findings pose a serious challenge to the scientific advancement and sustainability of the EU information system
Summary
Research networks offer multidisciplinary expertise and promote information exchange between researchers across Europe They are essential for the European Union’s (EU) health information system as providers of health information and data. Research networks (RNs) offer multidisciplinary expertise and promote information exchange between researchers across Europe and extra-European countries They are essential for health information systems as providers of health information and data, collaborating with various sectors, such as government, industry, academia and independent research groups. Many RNs include in their activities the collection of data and information from multiple verified sources into compiled databases, following standardized procedures. Their data and information could be considered more reliable compared to those from individual sources. Collaboration in RNs enhances the productivity of individual researchers [1, 2]
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