Desiderata for discoverability and FAIR adoption of health data hubs

[Background] The future European Health Research and Innovation Cloud (HRIC), as fundamental part of the European Health Data Space (EHDS), will promote the secondary use of data and the capabilities to push the boundaries of health research within an ethical and legally compliant framework that rei...

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Authors: Álvarez-Romero, Celia, Bernabeu Wittel, Máximo, Parra-Calderón, Carlos Luis, Rodríguez-Mejias, Silvia, Martínez-García, Alicia
Format: article
Status:Published version
Publication Date:2024
Country:España
Institution:Consejo Superior de Investigaciones Científicas (CSIC)
Repository:DIGITAL.CSIC. Repositorio Institucional del CSIC
OAI Identifier:oai:digital.csic.es:10261/371064
Online Access:http://hdl.handle.net/10261/371064
https://api.elsevier.com/content/abstract/scopus_id/85199974578
Access Level:Open access
Keyword:Survey
Data discoverability
Data management
FAIR principles
Health data hubs
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spelling Desiderata for discoverability and FAIR adoption of health data hubsÁlvarez-Romero, CeliaBernabeu Wittel, MáximoParra-Calderón, Carlos LuisRodríguez-Mejias, SilviaMartínez-García, AliciaSurveyData discoverabilityData managementFAIR principlesHealth data hubs[Background] The future European Health Research and Innovation Cloud (HRIC), as fundamental part of the European Health Data Space (EHDS), will promote the secondary use of data and the capabilities to push the boundaries of health research within an ethical and legally compliant framework that reinforces the trust of patients and citizens.[Objective] This study aimed to analyse health data management mechanisms in Europe to determine their alignment with FAIR principles and data discovery generating best. practices for new data hubs joining the HRIC ecosystem. In this line, the compliance of health data hubs with FAIR principles and data discovery were assessed, and a set of best practices for health data hubs was concluded.[Methods] A survey was conducted in January 2022, involving 99 representative health data hubs from multiple countries, and 42 responses were obtained in June 2022. Stratification methods were employed to cover different levels of granularity. The survey data was analysed to assess compliance with FAIR and data discovery principles. The study started with a general analysis of survey responses, followed by the creation of specific profiles based on three categories: organization type, function, and level of data aggregation.[Results] The study produced specific best practices for data hubs regarding the adoption of FAIR principles and data discoverability. It also provided an overview of the survey study and specific profiles derived from category analysis, considering different types of data hubs.[Conclusions] The study concluded that a significant number of health data hubs in Europe did not fully comply with FAIR and data discovery principles. However, the study identified specific best practices that can guide new data hubs in adhering to these principles. The study highlighted the importance of aligning health data management mechanisms with FAIR principles to enhance interoperability and reusability in the future HRIC.This work was supported by the European Union’s Horizon 2020 research and innovation programme Coordination and Support Action HealthyCloud (grant agreement no. 965345) [1]. Also, this research has been co-supported by the Carlos III National Institute of Health, through the IMPaCT-Data programme (code IMP/00019) [28], and through the Platform for Dynamization and Innovation of the Spanish National Health System industrial capacities and their effective transfer to the productive sector (code PT20/00088), both co-funded by European Regional Development Fund (FEDER) ‘A way of making Europe’.Peer reviewedElsevierEuropean CommissionInstituto de Salud Carlos IIIMinisterio de Sanidad (España)Consejo Superior de Investigaciones Científicas [https://ror.org/02gfc7t72]202420242024info:eu-repo/semantics/articlehttp://purl.org/coar/resource_type/c_6501Publisher's versioninfo:eu-repo/semantics/publishedVersionapplication/pdfhttp://hdl.handle.net/10261/371064https://api.elsevier.com/content/abstract/scopus_id/85199974578reponame:DIGITAL.CSIC. Repositorio Institucional del CSICinstname:Consejo Superior de Investigaciones Científicas (CSIC)Inglés#PLACEHOLDER_PARENT_METADATA_VALUE#info:eu-repo/grantAgreement/EC/H2020/965345The underlying dataset has been published as supplementary material of the article in the publisher platform at DOI https://doi.org/10.1016/j.jbi.2024.104700https://doi.org/10.1016/j.jbi.2024.104700Síinfo:eu-repo/semantics/openAccessoai:digital.csic.es:10261/3710642026-05-22T06:33:51Z
dc.title.none.fl_str_mv Desiderata for discoverability and FAIR adoption of health data hubs
title Desiderata for discoverability and FAIR adoption of health data hubs
spellingShingle Desiderata for discoverability and FAIR adoption of health data hubs
Álvarez-Romero, Celia
Survey
Data discoverability
Data management
FAIR principles
Health data hubs
title_short Desiderata for discoverability and FAIR adoption of health data hubs
title_full Desiderata for discoverability and FAIR adoption of health data hubs
title_fullStr Desiderata for discoverability and FAIR adoption of health data hubs
title_full_unstemmed Desiderata for discoverability and FAIR adoption of health data hubs
title_sort Desiderata for discoverability and FAIR adoption of health data hubs
dc.creator.none.fl_str_mv Álvarez-Romero, Celia
Bernabeu Wittel, Máximo
Parra-Calderón, Carlos Luis
Rodríguez-Mejias, Silvia
Martínez-García, Alicia
author Álvarez-Romero, Celia
author_facet Álvarez-Romero, Celia
Bernabeu Wittel, Máximo
Parra-Calderón, Carlos Luis
Rodríguez-Mejias, Silvia
Martínez-García, Alicia
author_role author
author2 Bernabeu Wittel, Máximo
Parra-Calderón, Carlos Luis
Rodríguez-Mejias, Silvia
Martínez-García, Alicia
author2_role author
author
author
author
dc.contributor.none.fl_str_mv European Commission
Instituto de Salud Carlos III
Ministerio de Sanidad (España)
Consejo Superior de Investigaciones Científicas [https://ror.org/02gfc7t72]
dc.subject.none.fl_str_mv Survey
Data discoverability
Data management
FAIR principles
Health data hubs
topic Survey
Data discoverability
Data management
FAIR principles
Health data hubs
description [Background] The future European Health Research and Innovation Cloud (HRIC), as fundamental part of the European Health Data Space (EHDS), will promote the secondary use of data and the capabilities to push the boundaries of health research within an ethical and legally compliant framework that reinforces the trust of patients and citizens.
publishDate 2024
dc.date.none.fl_str_mv 2024
2024
2024
dc.type.none.fl_str_mv info:eu-repo/semantics/article
http://purl.org/coar/resource_type/c_6501
Publisher's version
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/10261/371064
https://api.elsevier.com/content/abstract/scopus_id/85199974578
url http://hdl.handle.net/10261/371064
https://api.elsevier.com/content/abstract/scopus_id/85199974578
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv #PLACEHOLDER_PARENT_METADATA_VALUE#
info:eu-repo/grantAgreement/EC/H2020/965345
The underlying dataset has been published as supplementary material of the article in the publisher platform at DOI https://doi.org/10.1016/j.jbi.2024.104700
https://doi.org/10.1016/j.jbi.2024.104700
Sí
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Elsevier
publisher.none.fl_str_mv Elsevier
dc.source.none.fl_str_mv reponame:DIGITAL.CSIC. Repositorio Institucional del CSIC
instname:Consejo Superior de Investigaciones Científicas (CSIC)
instname_str Consejo Superior de Investigaciones Científicas (CSIC)
reponame_str DIGITAL.CSIC. Repositorio Institucional del CSIC
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repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15.812455

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