Health data collection methods and procedures across EU member states: findings from the InfAct Joint Action on health information

Unim, B (通讯作者),Ist Super Sanita, Dept Cardiovasc Endocrine Metab Dis & Aging, Via Giano Bella 34, I-00162 Rome, Italy.
2022-1-5
Background Health-related data are collected from a variety of sources for different purposes, including secondary use for population health monitoring (HM) and health system performance assessment (HSPA). Most of these data sources are not included in databases of international organizations (e.g., WHO, OECD, Eurostat), limiting their use for research activities and policy making. This study aims at identifying and describing collection methods, quality assessment procedures, availability and accessibility of health data across EU Member States (MS) for HM and HSPA. Methods A structured questionnaire was developed and administered through an online platform to partners of the InfAct consortium form EU MS to investigate data collections applied in HM and HSPA projects, as well as their methods and procedures. A descriptive analysis of the questionnaire results was performed. Results Information on 91 projects from 18 EU MS was collected. In these projects, data were mainly collected through administrative sources, population health interview or health examination surveys and from electronic medical records. Tools and methods used for data collection were mostly mandatory reports, self-administered questionnaires, or record linkage of various data sources. One-third of the projects shared data with EU research networks and less than one-third performed quality assessment of their data collection procedures using international standardized criteria. Macrodata were accessible via open access and reusable in 22 projects. Microdata were accessible upon specific request and reusable in 15 projects based on data usage licenses. Metadata was available for the majority of the projects, but followed reporting standards only in 29 projects. Overall, compliance to FAIR Data principles (Findable, Accessible, Interoperable, and Reusable) was not optimal across the EU projects. Conclusions Data collection and exchange procedures differ across EU MS and research data are not always available, accessible, comparable or reusable for further research and evidence-based policy making. There is a need for an EU-level health information infrastructure and governance to promote and facilitate sharing and dissemination of standardized and comparable health data, following FAIR Data principles, across the EU.
ARCHIVES OF PUBLIC HEALTH
卷号:80|期号:1
ISSN:0778-7367|收录类别:SCIE
语种
英语
来源机构
Istituto Superiore di Sanita (ISS); Marche Polytechnic University; Netherlands National Institute for Public Health & the Environment; Robert Koch Institute; Institute of Public Health Surveillance; Sciensano
资助机构
European Union(European Commission)
资助信息
This publication was funded by the European Union's Health Programme (2014-2020). The funding body was not involved in the design of the study, in the collection, analysis, and interpretation of data and in writing the manuscript. The content of this publication represents the views of the authors only and is their sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
被引频次(WOS)
1
被引频次(其他)
1
180天使用计数
2
2013以来使用计数
4
EISSN
2049-3258
出版年
2022-1-5
DOI
10.1186/s13690-021-00780-4
WOS学科分类
Public, Environmental & Occupational Health
学科领域
循证公共卫生
关键词
Health data Health information Data collection methods Quality assessment Data availability Data accessibility FAIR principles