{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,7]],"date-time":"2026-02-07T10:03:06Z","timestamp":1770458586032,"version":"3.49.0"},"reference-count":15,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,1,10]],"date-time":"2022-01-10T00:00:00Z","timestamp":1641772800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,1,10]],"date-time":"2022-01-10T00:00:00Z","timestamp":1641772800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100013272","name":"Third Health Programme","doi-asserted-by":"publisher","award":["Grant #801553"],"award-info":[{"award-number":["Grant #801553"]}],"id":[{"id":"10.13039\/100013272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Arch Public Health"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Research networks offer multidisciplinary expertise and promote information exchange between researchers across Europe. They are essential for the European Union\u2019s (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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13690-021-00766-2","type":"journal-article","created":{"date-parts":[[2022,1,10]],"date-time":"2022-01-10T12:04:19Z","timestamp":1641816259000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Mapping European research networks providing health data: results from the InfAct Joint Action on health\u00a0information"],"prefix":"10.1186","volume":"80","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6522-9098","authenticated-orcid":false,"given":"Brigid","family":"Unim","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elsi","family":"Haverinen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eugenio","family":"Mattei","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Flavia","family":"Carle","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrea","family":"Faragalli","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rosaria","family":"Gesuita","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martin","family":"Thissen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linda","family":"Abboud","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tiziana","family":"Grisetti","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Petronille","family":"Bogaert","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Luigi","family":"Palmieri","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2022,1,10]]},"reference":[{"key":"766_CR1","doi-asserted-by":"publisher","first-page":"335","DOI":"10.1038\/490335a","volume":"490","author":"J Adams","year":"2012","unstructured":"Adams J. The rise of research networks. Nature. 2012;490:335\u20136. https:\/\/doi.org\/10.1038\/490335a.","journal-title":"Nature"},{"key":"766_CR2","volume-title":"Key enabling factors in effective and sustainable research networks: findings from a qualitative research study","author":"WHO\/TDR","year":"2016","unstructured":"WHO\/TDR. Key enabling factors in effective and sustainable research networks: findings from a qualitative research study. 2016. https:\/\/www.who.int\/tdr\/publications\/research-networks\/en\/."},{"issue":"10242","key":"766_CR3","doi-asserted-by":"publisher","first-page":"1970","DOI":"10.1016\/S0140-6736(20)31411-2","volume":"395","author":"KR Sipido","year":"2020","unstructured":"Sipido KR, Anto\u00f1anzas F, Celis J, et al. Overcoming fragmentation of health research in Europe: lessons from COVID-19. Lancet. 2020;395(10242):1970\u20131. https:\/\/doi.org\/10.1016\/S0140-6736(20)31411-2.","journal-title":"Lancet."},{"key":"766_CR4","unstructured":"Eurostat. Item 6: Quality assessment of administrative data for statistical purposes. Working Group \u2018Assessment of quality in statistics\u2019, sixth meeting. Luxembourg; 2003."},{"key":"766_CR5","unstructured":"European Collaboration for Healthcare Optimization (ECHO) www.echo-health.eu. Zaragoza (Spain): Instituto Aragon\u00e9s de Ciencias de la Salud - Instituto Investigaci\u00f3n Sanitaria Arag\u00f3n; c2011. Estupi\u00f1\u00e1n F, Baixauli C, Bernal-Delgado E on behalf of the ECHO consortium. Handbook on methodology: ECHO information system quality report; 2014. http:\/\/www.echo-health.eu\/handbook\/getting-indicators.html.\u00a0Accessed 10 Mar 2021."},{"key":"766_CR6","unstructured":"World Health Organization (WHO). International Statistical Classification of Diseases and Related Health Problems (ICD). https:\/\/www.who.int\/standards\/classifications\/classification-of-diseases. Accessed 12 Apr 2021."},{"key":"766_CR7","unstructured":"International Labour Organization (ILO). International Standard Classification of Occupations (ISCO). https:\/\/www.ilo.org\/public\/english\/bureau\/stat\/isco\/isco08\/. Accessed 12 Apr 2021."},{"key":"766_CR8","unstructured":"United Nations Educational, Scientific and Cultural Organization (UNESCO). The International Standard Classification of Education (ISCED). http:\/\/uis.unesco.org\/en\/topic\/international-standard-classification-education-isced. Accessed 12 Apr 2021."},{"key":"766_CR9","unstructured":"EUROSTAT. ESS reference metadata reporting standards. https:\/\/ec.europa.eu\/eurostat\/data\/metadata\/metadata-structure. Accessed 12 Apr 2021."},{"key":"766_CR10","unstructured":"Observational Health Data Sciences and Informatics (OHDSI). OMOP Common Data Model. https:\/\/www.ohdsi.org\/data-standardization\/the-common-data-model\/. Accessed 12 Apr 2021."},{"key":"766_CR11","unstructured":"Health Metrics Network, World Health Organization. Framework and standards for country health information systems 2nd ed. 2008. Reprinted 2012."},{"key":"766_CR12","unstructured":"National Archives of Australia. Interoperability development phases resource. Australian Government; 2019. http:\/\/www.naa.gov.au\/naaresources\/images\/giap\/interoperability-development-phases-resource.pdf."},{"key":"766_CR13","volume-title":"Methods of field epidemiology","author":"PDM MacDonald","year":"2012","unstructured":"MacDonald PDM. Methods of field epidemiology. Burlington: Jones & Bartlett Learning; 2012."},{"issue":"11","key":"766_CR14","doi-asserted-by":"publisher","first-page":"252","DOI":"10.14745\/ccdr.v45i10a01","volume":"45","author":"P Huston","year":"2019","unstructured":"Huston P, Edge VL, Bernier E. Reaping the benefits of open data in public health. Can Commun Dis Rep. 2019;45(11):252\u20136. https:\/\/doi.org\/10.14745\/ccdr.v45i10a01.","journal-title":"Can Commun Dis Rep"},{"key":"766_CR15","unstructured":"General Data Protection Regulation (GDPR). https:\/\/gdpr-info.eu\/.\u00a0Accessed 15 Apr 2021."}],"container-title":["Archives of Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13690-021-00766-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13690-021-00766-2\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13690-021-00766-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,1,10]],"date-time":"2022-01-10T12:04:37Z","timestamp":1641816277000},"score":1,"resource":{"primary":{"URL":"https:\/\/archpublichealth.biomedcentral.com\/articles\/10.1186\/s13690-021-00766-2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1,10]]},"references-count":15,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,12]]}},"alternative-id":["766"],"URL":"https:\/\/doi.org\/10.1186\/s13690-021-00766-2","relation":{},"ISSN":["2049-3258"],"issn-type":[{"value":"2049-3258","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,1,10]]},"assertion":[{"value":"15 June 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"17 December 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 January 2022","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"23"}}