Unim Brigid, Haverinen Elsi, Mattei Eugenio, Carle Flavia, Faragalli Andrea, Gesuita Rosaria, Thissen Martin, Abboud Linda, Grisetti Tiziana, Bogaert Petronille, Palmieri Luigi
Department of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di Sanità, Rome, Italy.
Department of Public Health and Welfare, Finnish Institute for Health and Welfare (THL), Helsinki, Finland.
Arch Public Health. 2022 Jan 10;80(1):23. doi: 10.1186/s13690-021-00766-2.
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. 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.
A 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.
Fifty-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).
Improving 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.
研究网络提供多学科专业知识，并促进欧洲各地研究人员之间的信息交流。作为健康信息和数据的提供者，它们对欧盟的健康信息系统至关重要。本次映射研究的目的是从健康数据收集方法、质量评估、可用性和获取程序等方面识别和分析欧盟研究网络。
进行了基于网络的搜索，以识别不属于国际组织（如世界卫生组织欧洲区域办事处、经济合作与发展组织）且参与健康监测或卫生系统绩效评估数据收集的欧盟研究网络。通过专门的提取表格收集研究网络的一般特征（如数据源、代表性）、质量评估程序、健康数据的可用性和获取情况。
确定了57个在国家、国际或区域层面具有代表性的研究网络。在这些网络中，数据主要通过行政来源、健康调查和队列研究收集。超过70%的网络提供了其数据收集程序质量评估的信息。大多数网络通过文章和报告共享宏观数据，而有10个网络可提供微观数据。14个网络要求提出数据访问请求，其中3个收取费用。很少有网络与其他研究网络共享数据（8/49）或指定用于数据描述的元数据报告标准（9/49）。
改善健康信息和高质量数据的可用性是欧洲的一个优先事项。研究网络可通过提高健康数据的质量、可用性和可及性以及欧洲网络间的数据共享，在解决健康数据和信息不平等问题方面发挥重要作用。
