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2022-01-05Zeitschriftenartikel
Health data collection methods and procedures across EU member states: findings from the InfAct Joint Action on health information
dc.contributor.authorUnim, Brigid
dc.contributor.authorMattei, Eugenio
dc.contributor.authorCarle, Flavia
dc.contributor.authorTolonen, Hanna
dc.contributor.authorBernal-Delgado, Enrique
dc.contributor.authorAchterberg, Peter
dc.contributor.authorZaletel, Metka
dc.contributor.authorSeeling, Stefanie
dc.contributor.authorHaneef, Romana
dc.contributor.authorLorcy, Anne-Charlotte
dc.contributor.authorvan Oyen, Herman
dc.contributor.authorPalmieri, Luigi
dc.date.accessioned2024-08-30T11:01:38Z
dc.date.available2024-08-30T11:01:38Z
dc.date.issued2022-01-05none
dc.identifier.other10.1186/s13690-021-00780-4
dc.identifier.urihttp://edoc.rki.de/176904/12049
dc.description.abstractBackground 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.ger
dc.language.isoengnone
dc.publisherRobert Koch-Institut
dc.rights(CC BY 3.0 DE) Namensnennung 3.0 Deutschlandger
dc.rights.urihttp://creativecommons.org/licenses/by/3.0/de/
dc.subjecthealth dataeng
dc.subjecthealth informationeng
dc.subjectdata collection methodseng
dc.subjectquality assessmenteng
dc.subjectdata availabilityeng
dc.subjectdata accessibilityeng
dc.subjectFAIR principleseng
dc.subject.ddc610 Medizin und Gesundheitnone
dc.titleHealth data collection methods and procedures across EU member states: findings from the InfAct Joint Action on health informationnone
dc.typearticle
dc.identifier.urnurn:nbn:de:0257-176904/12049-3
dc.type.versionupdatedVersionnone
local.edoc.container-titleArchives of Public Healthnone
local.edoc.container-issn2049-3258none
local.edoc.pages10none
local.edoc.type-nameZeitschriftenartikel
local.edoc.container-typeperiodical
local.edoc.container-type-nameZeitschrift
local.edoc.container-urlhttps://archpublichealth.biomedcentral.com/none
local.edoc.container-publisher-nameSpringer Naturenone
local.edoc.container-volume80none
local.edoc.container-reportyear2022none
dc.description.versionPeer Reviewednone

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