{"id":"https://openalex.org/W4382631260","doi":"https://doi.org/10.3233/shti230452","title":"Desiderata for the Data Governance and FAIR Principles Adoption in Health Data Hubs","display_name":"Desiderata for the Data Governance and FAIR Principles Adoption in Health Data Hubs","publication_year":2023,"publication_date":"2023-06-29","ids":{"openalex":"https://openalex.org/W4382631260","doi":"https://doi.org/10.3233/shti230452","pmid":"https://pubmed.ncbi.nlm.nih.gov/37386986"},"language":"en","primary_location":{"id":"doi:10.3233/shti230452","is_oa":true,"landing_page_url":"http://dx.doi.org/10.3233/shti230452","pdf_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI230452","source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI230452","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5021984164","display_name":"Celia \u00c1lvarez-Romero","orcid":"https://orcid.org/0000-0001-8647-9515"},"institutions":[{"id":"https://openalex.org/I4210133602","display_name":"Instituto de Biomedicina de Sevilla","ror":"https://ror.org/031zwx660","country_code":"ES","type":"facility","lineage":["https://openalex.org/I134820265","https://openalex.org/I158283456","https://openalex.org/I4210133602","https://openalex.org/I79238269","https://openalex.org/I918821925"]},{"id":"https://openalex.org/I4210153139","display_name":"Hospital Universitario Virgen del Roc\u00edo","ror":"https://ror.org/04vfhnm78","country_code":"ES","type":"healthcare","lineage":["https://openalex.org/I4210153139"]},{"id":"https://openalex.org/I79238269","display_name":"Universidad de Sevilla","ror":"https://ror.org/03yxnpp24","country_code":"ES","type":"education","lineage":["https://openalex.org/I79238269"]}],"countries":["ES"],"is_corresponding":false,"raw_author_name":"Celia Alvarez-Romero","raw_affiliation_strings":["Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS / Virgen del Roc\u00edo University Hospital / CSIC / University of Seville, Seville, Spain"],"raw_orcid":"https://orcid.org/0000-0001-8647-9515","affiliations":[{"raw_affiliation_string":"Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS / Virgen del Roc\u00edo University Hospital / CSIC / University of Seville, Seville, Spain","institution_ids":["https://openalex.org/I4210133602","https://openalex.org/I4210153139","https://openalex.org/I79238269"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5103285737","display_name":"Silvia Rodr\u00edguez-Mej\u00edas","orcid":"https://orcid.org/0009-0009-9916-4729"},"institutions":[{"id":"https://openalex.org/I4210133602","display_name":"Instituto de Biomedicina de Sevilla","ror":"https://ror.org/031zwx660","country_code":"ES","type":"facility","lineage":["https://openalex.org/I134820265","https://openalex.org/I158283456","https://openalex.org/I4210133602","https://openalex.org/I79238269","https://openalex.org/I918821925"]},{"id":"https://openalex.org/I4210153139","display_name":"Hospital Universitario Virgen del Roc\u00edo","ror":"https://ror.org/04vfhnm78","country_code":"ES","type":"healthcare","lineage":["https://openalex.org/I4210153139"]},{"id":"https://openalex.org/I79238269","display_name":"Universidad de Sevilla","ror":"https://ror.org/03yxnpp24","country_code":"ES","type":"education","lineage":["https://openalex.org/I79238269"]}],"countries":["ES"],"is_corresponding":false,"raw_author_name":"Silvia Rodr\u00edguez-Mejias","raw_affiliation_strings":["Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS / Virgen del Roc\u00edo University Hospital / CSIC / University of Seville, Seville, Spain"],"raw_orcid":"https://orcid.org/0009-0009-9916-4729","affiliations":[{"raw_affiliation_string":"Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS / Virgen del Roc\u00edo University Hospital / CSIC / University of Seville, Seville, Spain","institution_ids":["https://openalex.org/I4210133602","https://openalex.org/I4210153139","https://openalex.org/I79238269"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5031426344","display_name":"Carlos Lu\u00eds Parra-Calder\u00f3n","orcid":"https://orcid.org/0000-0003-2609-575X"},"institutions":[{"id":"https://openalex.org/I4210133602","display_name":"Instituto de Biomedicina de Sevilla","ror":"https://ror.org/031zwx660","country_code":"ES","type":"facility","lineage":["https://openalex.org/I134820265","https://openalex.org/I158283456","https://openalex.org/I4210133602","https://openalex.org/I79238269","https://openalex.org/I918821925"]},{"id":"https://openalex.org/I4210153139","display_name":"Hospital Universitario Virgen del Roc\u00edo","ror":"https://ror.org/04vfhnm78","country_code":"ES","type":"healthcare","lineage":["https://openalex.org/I4210153139"]},{"id":"https://openalex.org/I79238269","display_name":"Universidad de Sevilla","ror":"https://ror.org/03yxnpp24","country_code":"ES","type":"education","lineage":["https://openalex.org/I79238269"]}],"countries":["ES"],"is_corresponding":false,"raw_author_name":"Carlos Luis Parra-Calder\u00f3n","raw_affiliation_strings":["Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS / Virgen del Roc\u00edo University Hospital / CSIC / University of Seville, Seville, Spain"],"raw_orcid":"https://orcid.org/0000-0003-2609-575X","affiliations":[{"raw_affiliation_string":"Computational Health Informatics Group, Institute of Biomedicine of Seville, IBiS / Virgen del Roc\u00edo University Hospital / CSIC / University of Seville, Seville, Spain","institution_ids":["https://openalex.org/I4210133602","https://openalex.org/I4210153139","https://openalex.org/I79238269"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":2.1477,"has_fulltext":false,"cited_by_count":3,"citation_normalized_percentile":{"value":0.87719414,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":96,"max":97},"biblio":{"volume":"305","issue":null,"first_page":"164","last_page":"167"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11937","display_name":"Research Data Management Practices","score":0.989799976348877,"subfield":{"id":"https://openalex.org/subfields/1710","display_name":"Information Systems"},"field":{"id":"https://openalex.org/fields/17","display_name":"Computer Science"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},"topics":[{"id":"https://openalex.org/T11937","display_name":"Research Data Management Practices","score":0.989799976348877,"subfield":{"id":"https://openalex.org/subfields/1710","display_name":"Information Systems"},"field":{"id":"https://openalex.org/fields/17","display_name":"Computer Science"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},{"id":"https://openalex.org/T11719","display_name":"Data Quality and Management","score":0.9855999946594238,"subfield":{"id":"https://openalex.org/subfields/1803","display_name":"Management Science and Operations Research"},"field":{"id":"https://openalex.org/fields/18","display_name":"Decision Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11986","display_name":"Scientific Computing and Data Management","score":0.9660000205039978,"subfield":{"id":"https://openalex.org/subfields/1802","display_name":"Information Systems and Management"},"field":{"id":"https://openalex.org/fields/18","display_name":"Decision Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/data-governance","display_name":"Data governance","score":0.767259955406189},{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.7234922647476196},{"id":"https://openalex.org/keywords/corporate-governance","display_name":"Corporate governance","score":0.6022717952728271},{"id":"https://openalex.org/keywords/cloud-computing","display_name":"Cloud computing","score":0.55855393409729},{"id":"https://openalex.org/keywords/health-data","display_name":"Health data","score":0.49982762336730957},{"id":"https://openalex.org/keywords/data-management","display_name":"Data management","score":0.4865516722202301},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.4810212254524231},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.47725746035575867},{"id":"https://openalex.org/keywords/set","display_name":"Set (abstract data type)","score":0.46946680545806885},{"id":"https://openalex.org/keywords/best-practice","display_name":"Best practice","score":0.461336225271225},{"id":"https://openalex.org/keywords/business","display_name":"Business","score":0.4336680471897125},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.43026259541511536},{"id":"https://openalex.org/keywords/survey-data-collection","display_name":"Survey data collection","score":0.4178524911403656},{"id":"https://openalex.org/keywords/data-collection","display_name":"Data collection","score":0.4120941162109375},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.2632583677768707},{"id":"https://openalex.org/keywords/data-mining","display_name":"Data mining","score":0.23502197861671448},{"id":"https://openalex.org/keywords/data-quality","display_name":"Data quality","score":0.13754332065582275},{"id":"https://openalex.org/keywords/marketing","display_name":"Marketing","score":0.13673058152198792},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.12583443522453308},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.11240828037261963},{"id":"https://openalex.org/keywords/finance","display_name":"Finance","score":0.09145519137382507}],"concepts":[{"id":"https://openalex.org/C196879817","wikidata":"https://www.wikidata.org/wiki/Q872685","display_name":"Data governance","level":4,"score":0.767259955406189},{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.7234922647476196},{"id":"https://openalex.org/C39389867","wikidata":"https://www.wikidata.org/wiki/Q380767","display_name":"Corporate governance","level":2,"score":0.6022717952728271},{"id":"https://openalex.org/C79974875","wikidata":"https://www.wikidata.org/wiki/Q483639","display_name":"Cloud computing","level":2,"score":0.55855393409729},{"id":"https://openalex.org/C3017977704","wikidata":"https://www.wikidata.org/wiki/Q18745135","display_name":"Health data","level":3,"score":0.49982762336730957},{"id":"https://openalex.org/C1668388","wikidata":"https://www.wikidata.org/wiki/Q1149776","display_name":"Data management","level":2,"score":0.4865516722202301},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.4810212254524231},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.47725746035575867},{"id":"https://openalex.org/C177264268","wikidata":"https://www.wikidata.org/wiki/Q1514741","display_name":"Set (abstract data type)","level":2,"score":0.46946680545806885},{"id":"https://openalex.org/C184356942","wikidata":"https://www.wikidata.org/wiki/Q830382","display_name":"Best practice","level":2,"score":0.461336225271225},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.4336680471897125},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.43026259541511536},{"id":"https://openalex.org/C198477413","wikidata":"https://www.wikidata.org/wiki/Q7647069","display_name":"Survey data collection","level":2,"score":0.4178524911403656},{"id":"https://openalex.org/C133462117","wikidata":"https://www.wikidata.org/wiki/Q4929239","display_name":"Data collection","level":2,"score":0.4120941162109375},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.2632583677768707},{"id":"https://openalex.org/C124101348","wikidata":"https://www.wikidata.org/wiki/Q172491","display_name":"Data mining","level":1,"score":0.23502197861671448},{"id":"https://openalex.org/C24756922","wikidata":"https://www.wikidata.org/wiki/Q1757694","display_name":"Data quality","level":3,"score":0.13754332065582275},{"id":"https://openalex.org/C162853370","wikidata":"https://www.wikidata.org/wiki/Q39809","display_name":"Marketing","level":1,"score":0.13673058152198792},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.12583443522453308},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.11240828037261963},{"id":"https://openalex.org/C10138342","wikidata":"https://www.wikidata.org/wiki/Q43015","display_name":"Finance","level":1,"score":0.09145519137382507},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.0},{"id":"https://openalex.org/C176217482","wikidata":"https://www.wikidata.org/wiki/Q860554","display_name":"Metric (unit)","level":2,"score":0.0},{"id":"https://openalex.org/C199360897","wikidata":"https://www.wikidata.org/wiki/Q9143","display_name":"Programming language","level":1,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0},{"id":"https://openalex.org/C105795698","wikidata":"https://www.wikidata.org/wiki/Q12483","display_name":"Statistics","level":1,"score":0.0},{"id":"https://openalex.org/C111919701","wikidata":"https://www.wikidata.org/wiki/Q9135","display_name":"Operating system","level":1,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C33923547","wikidata":"https://www.wikidata.org/wiki/Q395","display_name":"Mathematics","level":0,"score":0.0}],"mesh":[{"descriptor_ui":"D000079803","descriptor_name":"Data Management","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000079803","descriptor_name":"Data Management","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000079803","descriptor_name":"Data Management","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D005060","descriptor_name":"Europe","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005060","descriptor_name":"Europe","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005060","descriptor_name":"Europe","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012017","descriptor_name":"Referral and Consultation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012017","descriptor_name":"Referral and Consultation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012017","descriptor_name":"Referral and Consultation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017753","descriptor_name":"Ecosystem","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D017753","descriptor_name":"Ecosystem","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D017753","descriptor_name":"Ecosystem","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.3233/shti230452","is_oa":true,"landing_page_url":"http://dx.doi.org/10.3233/shti230452","pdf_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI230452","source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},{"id":"pmid:37386986","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/37386986","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in health technology and informatics","raw_type":null},{"id":"pmh:oai:digital.csic.es:10261/336206","is_oa":true,"landing_page_url":"http://hdl.handle.net/10261/336206","pdf_url":null,"source":{"id":"https://openalex.org/S4306400616","display_name":"DIGITAL.CSIC (Spanish National Research Council (CSIC))","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I134820265","host_organization_name":"Consejo Superior de Investigaciones Cient\u00edficas","host_organization_lineage":["https://openalex.org/I134820265"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"art\u00edculo"}],"best_oa_location":{"id":"doi:10.3233/shti230452","is_oa":true,"landing_page_url":"http://dx.doi.org/10.3233/shti230452","pdf_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI230452","source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/9","score":0.5899999737739563,"display_name":"Industry, innovation and infrastructure"}],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4382631260.pdf","grobid_xml":"https://content.openalex.org/works/W4382631260.grobid-xml"},"referenced_works_count":6,"referenced_works":["https://openalex.org/W2071082420","https://openalex.org/W2286036512","https://openalex.org/W2302501749","https://openalex.org/W3010280017","https://openalex.org/W4281759067","https://openalex.org/W4312954583"],"related_works":["https://openalex.org/W3198250195","https://openalex.org/W4367303911","https://openalex.org/W3156848922","https://openalex.org/W3009700550","https://openalex.org/W3007935833","https://openalex.org/W2892749931","https://openalex.org/W4234782487","https://openalex.org/W3207370492","https://openalex.org/W4387161435","https://openalex.org/W4382631260"],"abstract_inverted_index":{"The":[0],"objective":[1],"of":[2,7,20,35,52,60],"this":[3],"study,":[4],"as":[5,80],"part":[6],"the":[8,16,50,53,81],"European":[9,83],"HealthyCloud":[10],"project,":[11],"has":[12],"been":[13],"to":[14,56],"analyse":[15],"data":[17,22,41,69,76],"management":[18],"mechanisms":[19],"representative":[21],"hubs":[23,70],"in":[24],"Europe":[25],"and":[26,49,63,86],"identify":[27],"whether":[28],"they":[29],"comply":[30],"with":[31],"an":[32],"adequate":[33],"adoption":[34],"FAIR":[36],"principles":[37],"that":[38,67],"will":[39],"enable":[40],"discovery.":[42],"A":[43],"dedicated":[44],"consultation":[45],"survey":[46],"was":[47],"performed,":[48],"analysis":[51],"results":[54],"allowed":[55],"generate":[57],"a":[58,75],"set":[59],"comprehensive":[61],"recommendations":[62],"best":[64],"practices":[65],"so":[66],"these":[68],"can":[71],"be":[72],"integrated":[73],"into":[74],"sharing":[77],"ecosystem":[78],"such":[79],"future":[82],"Health":[84],"Research":[85],"Innovation":[87],"Cloud.":[88]},"counts_by_year":[{"year":2024,"cited_by_count":3}],"updated_date":"2026-06-11T09:08:48.828518","created_date":"2025-10-10T00:00:00"}
