Mapping European research networks providing health data: results from the InfAct Joint Action on health information
Abstract Background 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...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-01-01
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| Series: | Archives of Public Health |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13690-021-00766-2 |
| _version_ | 1828138200709726208 |
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| author | Brigid Unim Elsi Haverinen Eugenio Mattei Flavia Carle Andrea Faragalli Rosaria Gesuita Martin Thissen Linda Abboud Tiziana Grisetti Petronille Bogaert Luigi Palmieri |
| author_facet | Brigid Unim Elsi Haverinen Eugenio Mattei Flavia Carle Andrea Faragalli Rosaria Gesuita Martin Thissen Linda Abboud Tiziana Grisetti Petronille Bogaert Luigi Palmieri |
| author_sort | Brigid Unim |
| collection | DOAJ |
| description | Abstract Background 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. Methods 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. Results 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). Conclusions 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. |
| first_indexed | 2024-04-11T18:31:56Z |
| format | Article |
| id | doaj.art-50b1d358a0c54f20baf52e6ec7876102 |
| institution | Directory Open Access Journal |
| issn | 2049-3258 |
| language | English |
| last_indexed | 2024-04-11T18:31:56Z |
| publishDate | 2022-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Archives of Public Health |
| spelling | doaj.art-50b1d358a0c54f20baf52e6ec78761022022-12-22T04:09:24ZengBMCArchives of Public Health2049-32582022-01-018011810.1186/s13690-021-00766-2Mapping European research networks providing health data: results from the InfAct Joint Action on health informationBrigid Unim0Elsi Haverinen1Eugenio Mattei2Flavia Carle3Andrea Faragalli4Rosaria Gesuita5Martin Thissen6Linda Abboud7Tiziana Grisetti8Petronille Bogaert9Luigi Palmieri10Department of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di SanitàDepartment of Public Health and Welfare, Finnish Institute for Health and Welfare (THL)Department of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di SanitàCenter of Epidemiology, Biostatistics and Medical Information, Marche Polytechnic UniversityCenter of Epidemiology, Biostatistics and Medical Information, Marche Polytechnic UniversityCenter of Epidemiology, Biostatistics and Medical Information, Marche Polytechnic UniversityDepartment of Epidemiology and Health Monitoring, Robert Koch InstituteEpidemiology and Public Health, SciensanoDepartment of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di SanitàEpidemiology and Public Health, SciensanoDepartment of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di SanitàAbstract Background 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. Methods 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. Results 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). Conclusions 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.https://doi.org/10.1186/s13690-021-00766-2Research networkHealth informationData collectionQuality assessmentData availabilityData accessibility |
| spellingShingle | Brigid Unim Elsi Haverinen Eugenio Mattei Flavia Carle Andrea Faragalli Rosaria Gesuita Martin Thissen Linda Abboud Tiziana Grisetti Petronille Bogaert Luigi Palmieri Mapping European research networks providing health data: results from the InfAct Joint Action on health information Archives of Public Health Research network Health information Data collection Quality assessment Data availability Data accessibility |
| title | Mapping European research networks providing health data: results from the InfAct Joint Action on health information |
| title_full | Mapping European research networks providing health data: results from the InfAct Joint Action on health information |
| title_fullStr | Mapping European research networks providing health data: results from the InfAct Joint Action on health information |
| title_full_unstemmed | Mapping European research networks providing health data: results from the InfAct Joint Action on health information |
| title_short | Mapping European research networks providing health data: results from the InfAct Joint Action on health information |
| title_sort | mapping european research networks providing health data results from the infact joint action on health information |
| topic | Research network Health information Data collection Quality assessment Data availability Data accessibility |
| url | https://doi.org/10.1186/s13690-021-00766-2 |
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