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

Archives of Public Health

Flavia Carle¹  Peter Achterberg²  Enrique Bernal-Delgado³  Brigid Unim⁴  Luigi Palmieri⁴  Eugenio Mattei⁴  Stefanie Seeling⁵  Romana Haneef⁶  Hanna Tolonen⁷  Anne-Charlotte Lorcy⁸  Herman Van Oyen⁹  Metka Zaletel^1,10 

[1] Center of Epidemiology, Biostatistics and Medical Information, Marche Polytechnic University, Ancona, Italy;Centre for Health Knowledge Integration, National Institute for Public Health and the Environment (RIVM), Bilthoven, Netherlands;Data Sciences for Health Services and Policy Research Group, Institute for Health Sciences in Aragon (IACS), Zaragoza, Spain;Department of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di Sanità, Via Giano della Bella 34, 00162, Rome, Italy;Department of Epidemiology and Health Monitoring, Robert Koch Institute, Berlin, Germany;Department of Non-Communicable Diseases and Injuries, Santé Publique France, 94415, Saint-Maurice, France;Department of Public Health and Welfare, Finnish Institute for Health and Welfare (THL), Helsinki, Finland;Directorate of Health, Luxembourg, Luxembourg;Epidemiology and Public Health, Sciensano, Brussels, Belgium;Health Data Centre, National Institute of Public Health, Ljubljana, Slovenia;

关键词: Health data;    Health information;    Data collection methods;    Quality assessment;    Data availability;    Data accessibility;    FAIR principles;   

DOI  :  10.1186/s13690-021-00780-4

来源: Springer

【 摘 要 】

BackgroundHealth-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.MethodsA 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.ResultsInformation 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.ConclusionsData 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.

【 授权许可】

CC BY