{"id":"https://openalex.org/W4410447904","doi":"https://doi.org/10.3233/shti250404","title":"The Data Sharing Paradox of Synthetic Data in Healthcare","display_name":"The Data Sharing Paradox of Synthetic Data in Healthcare","publication_year":2025,"publication_date":"2025-05-15","ids":{"openalex":"https://openalex.org/W4410447904","doi":"https://doi.org/10.3233/shti250404","pmid":"https://pubmed.ncbi.nlm.nih.gov/40380514"},"language":"en","primary_location":{"id":"doi:10.3233/shti250404","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti250404","pdf_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI250404","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":"book-chapter","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI250404","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5094298497","display_name":"Jim Achterberg","orcid":"https://orcid.org/0009-0000-9589-7831"},"institutions":[{"id":"https://openalex.org/I2800006345","display_name":"Leiden University Medical Center","ror":"https://ror.org/05xvt9f17","country_code":"NL","type":"funder","lineage":["https://openalex.org/I2800006345"]}],"countries":["NL"],"is_corresponding":false,"raw_author_name":"Jim Achterberg","raw_affiliation_strings":["Leiden University Medical Center, The Netherlands"],"raw_orcid":"https://orcid.org/0009-0000-9589-7831","affiliations":[{"raw_affiliation_string":"Leiden University Medical Center, The Netherlands","institution_ids":["https://openalex.org/I2800006345"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5013443186","display_name":"Bram van Dijk","orcid":"https://orcid.org/0000-0002-6330-6934"},"institutions":[{"id":"https://openalex.org/I2800006345","display_name":"Leiden University Medical Center","ror":"https://ror.org/05xvt9f17","country_code":"NL","type":"funder","lineage":["https://openalex.org/I2800006345"]}],"countries":["NL"],"is_corresponding":false,"raw_author_name":"Bram van Dijk","raw_affiliation_strings":["Leiden University Medical Center, The Netherlands"],"raw_orcid":"https://orcid.org/0009-0002-9176-1608","affiliations":[{"raw_affiliation_string":"Leiden University Medical Center, The Netherlands","institution_ids":["https://openalex.org/I2800006345"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5035335908","display_name":"Saif ul Islam","orcid":"https://orcid.org/0000-0002-9546-4195"},"institutions":[{"id":"https://openalex.org/I39555362","display_name":"University of Warwick","ror":"https://ror.org/01a77tt86","country_code":"GB","type":"education","lineage":["https://openalex.org/I39555362"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Saif ul Islam","raw_affiliation_strings":["University of Warwick, UK"],"raw_orcid":"https://orcid.org/0000-0002-9546-4195","affiliations":[{"raw_affiliation_string":"University of Warwick, UK","institution_ids":["https://openalex.org/I39555362"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5070305773","display_name":"Hafiz Muhammad Waseem","orcid":"https://orcid.org/0000-0002-9418-1492"},"institutions":[{"id":"https://openalex.org/I39555362","display_name":"University of Warwick","ror":"https://ror.org/01a77tt86","country_code":"GB","type":"education","lineage":["https://openalex.org/I39555362"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Hafiz Muhammad Waseem","raw_affiliation_strings":["University of Warwick, UK"],"raw_orcid":"https://orcid.org/0000-0002-9418-1492","affiliations":[{"raw_affiliation_string":"University of Warwick, UK","institution_ids":["https://openalex.org/I39555362"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5018464844","display_name":"Parisis Gallos","orcid":"https://orcid.org/0000-0002-8630-7200"},"institutions":[{"id":"https://openalex.org/I2800033600","display_name":"European Society for Medical Oncology","ror":"https://ror.org/03xtz2n86","country_code":"CH","type":"nonprofit","lineage":["https://openalex.org/I2800033600"]}],"countries":["CH"],"is_corresponding":false,"raw_author_name":"Parisis Gallos","raw_affiliation_strings":["European Federation for Medical Informatics, Switzerland"],"raw_orcid":"https://orcid.org/0000-0002-8630-7200","affiliations":[{"raw_affiliation_string":"European Federation for Medical Informatics, Switzerland","institution_ids":["https://openalex.org/I2800033600"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5043277300","display_name":"Gregory Epiphaniou","orcid":"https://orcid.org/0000-0003-1054-6368"},"institutions":[{"id":"https://openalex.org/I39555362","display_name":"University of Warwick","ror":"https://ror.org/01a77tt86","country_code":"GB","type":"education","lineage":["https://openalex.org/I39555362"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Gregory Epiphaniou","raw_affiliation_strings":["University of Warwick, UK"],"raw_orcid":"https://orcid.org/0000-0003-1054-6368","affiliations":[{"raw_affiliation_string":"University of Warwick, UK","institution_ids":["https://openalex.org/I39555362"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5080175512","display_name":"Carsten Maple","orcid":"https://orcid.org/0000-0002-4715-212X"},"institutions":[{"id":"https://openalex.org/I39555362","display_name":"University of Warwick","ror":"https://ror.org/01a77tt86","country_code":"GB","type":"education","lineage":["https://openalex.org/I39555362"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Carsten Maple","raw_affiliation_strings":["University of Warwick, UK"],"raw_orcid":"https://orcid.org/0000-0002-4715-212X","affiliations":[{"raw_affiliation_string":"University of Warwick, UK","institution_ids":["https://openalex.org/I39555362"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5072790276","display_name":"M. Haas","orcid":"https://orcid.org/0000-0003-2581-8370"},"institutions":[{"id":"https://openalex.org/I2800006345","display_name":"Leiden University Medical Center","ror":"https://ror.org/05xvt9f17","country_code":"NL","type":"funder","lineage":["https://openalex.org/I2800006345"]}],"countries":["NL"],"is_corresponding":false,"raw_author_name":"Marcel Haas","raw_affiliation_strings":["Leiden University Medical Center, The Netherlands"],"raw_orcid":"https://orcid.org/0000-0003-2581-8370","affiliations":[{"raw_affiliation_string":"Leiden University Medical Center, The Netherlands","institution_ids":["https://openalex.org/I2800006345"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5033880574","display_name":"Marco Spruit","orcid":"https://orcid.org/0000-0002-9237-221X"},"institutions":[{"id":"https://openalex.org/I121797337","display_name":"Leiden University","ror":"https://ror.org/027bh9e22","country_code":"NL","type":"education","lineage":["https://openalex.org/I121797337"]},{"id":"https://openalex.org/I2800006345","display_name":"Leiden University Medical Center","ror":"https://ror.org/05xvt9f17","country_code":"NL","type":"funder","lineage":["https://openalex.org/I2800006345"]}],"countries":["NL"],"is_corresponding":false,"raw_author_name":"Marco Spruit","raw_affiliation_strings":["Leiden Institute of Advanced Computer Science, Leiden University, The Netherlands","Leiden University Medical Center, The Netherlands"],"raw_orcid":"https://orcid.org/0000-0002-9237-221X","affiliations":[{"raw_affiliation_string":"Leiden Institute of Advanced Computer Science, Leiden University, The Netherlands","institution_ids":["https://openalex.org/I121797337"]},{"raw_affiliation_string":"Leiden University Medical Center, The Netherlands","institution_ids":["https://openalex.org/I2800006345"]}]}],"institutions":[],"countries_distinct_count":3,"institutions_distinct_count":4,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.14047069,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"327","issue":null,"first_page":"582","last_page":"586"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10764","display_name":"Privacy-Preserving Technologies in Data","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/1702","display_name":"Artificial Intelligence"},"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/T10764","display_name":"Privacy-Preserving Technologies in Data","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/1702","display_name":"Artificial Intelligence"},"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":0.9843000173568726,"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/T11045","display_name":"Privacy, Security, and Data Protection","score":0.9718000292778015,"subfield":{"id":"https://openalex.org/subfields/3312","display_name":"Sociology and Political Science"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.7967038154602051},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.6405043005943298},{"id":"https://openalex.org/keywords/synthetic-data","display_name":"Synthetic data","score":0.6127483248710632},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.5771388411521912},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.5495551824569702},{"id":"https://openalex.org/keywords/health-data","display_name":"Health data","score":0.5246551036834717},{"id":"https://openalex.org/keywords/field","display_name":"Field (mathematics)","score":0.42396312952041626},{"id":"https://openalex.org/keywords/information-privacy","display_name":"Information privacy","score":0.4135291874408722},{"id":"https://openalex.org/keywords/internet-privacy","display_name":"Internet privacy","score":0.3957682251930237},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.12412506341934204},{"id":"https://openalex.org/keywords/artificial-intelligence","display_name":"Artificial intelligence","score":0.08542504906654358},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.062475740909576416}],"concepts":[{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.7967038154602051},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.6405043005943298},{"id":"https://openalex.org/C160920958","wikidata":"https://www.wikidata.org/wiki/Q7662746","display_name":"Synthetic data","level":2,"score":0.6127483248710632},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.5771388411521912},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.5495551824569702},{"id":"https://openalex.org/C3017977704","wikidata":"https://www.wikidata.org/wiki/Q18745135","display_name":"Health data","level":3,"score":0.5246551036834717},{"id":"https://openalex.org/C9652623","wikidata":"https://www.wikidata.org/wiki/Q190109","display_name":"Field (mathematics)","level":2,"score":0.42396312952041626},{"id":"https://openalex.org/C123201435","wikidata":"https://www.wikidata.org/wiki/Q456632","display_name":"Information privacy","level":2,"score":0.4135291874408722},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.3957682251930237},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.12412506341934204},{"id":"https://openalex.org/C154945302","wikidata":"https://www.wikidata.org/wiki/Q11660","display_name":"Artificial intelligence","level":1,"score":0.08542504906654358},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.062475740909576416},{"id":"https://openalex.org/C33923547","wikidata":"https://www.wikidata.org/wiki/Q395","display_name":"Mathematics","level":0,"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/C202444582","wikidata":"https://www.wikidata.org/wiki/Q837863","display_name":"Pure mathematics","level":1,"score":0.0},{"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/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016494","descriptor_name":"Computer Security","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016494","descriptor_name":"Computer Security","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000379","qualifier_name":"methods","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000379","qualifier_name":"methods","is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":2,"locations":[{"id":"doi:10.3233/shti250404","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti250404","pdf_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI250404","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:40380514","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/40380514","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":"Journal Article"}],"best_oa_location":{"id":"doi:10.3233/shti250404","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti250404","pdf_url":"https://ebooks.iospress.nl/pdf/doi/10.3233/SHTI250404","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":[],"awards":[{"id":"https://openalex.org/G4793945529","display_name":"INNOVATIVE APPLICATIONS OF ASSESSMENT AND ASSURANCE OF DATA AND SYNTHETIC DATA FOR REGULATORY DECISION SUPPORT","funder_award_id":"101095661","funder_id":"https://openalex.org/F4320320300","funder_display_name":"European Commission"}],"funders":[{"id":"https://openalex.org/F4320320300","display_name":"European Commission","ror":"https://ror.org/00k4n6c32"}],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4410447904.pdf","grobid_xml":"https://content.openalex.org/works/W4410447904.grobid-xml"},"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2584827882","https://openalex.org/W3195097297","https://openalex.org/W4225340788","https://openalex.org/W3038106605","https://openalex.org/W2513267613","https://openalex.org/W3049084372","https://openalex.org/W2528109871","https://openalex.org/W2940702331","https://openalex.org/W2905822832","https://openalex.org/W2240244939"],"abstract_inverted_index":{"Synthetic":[0],"data":[1,22,40,73,85,89],"offers":[2],"a":[3,16],"promising":[4],"solution":[5],"to":[6,105],"privacy":[7,54],"concerns":[8],"in":[9,15,75],"healthcare":[10],"by":[11],"generating":[12],"useful":[13],"datasets":[14],"privacy-aware":[17],"manner.":[18],"However,":[19],"although":[20],"synthetic":[21,39,57,84],"is":[23,52,86,92],"typically":[24],"developed":[25],"with":[26,67],"the":[27,43,49,80,100],"intention":[28],"of":[29,45,48],"sharing":[30,74,90],"said":[31],"data,":[32,58],"ambiguous":[33],"reidentification":[34,62],"risk":[35],"assessments":[36],"often":[37,93],"prevent":[38],"from":[41],"seeing":[42],"light":[44],"day.":[46],"One":[47],"main":[50],"causes":[51],"that":[53],"metrics":[55],"for":[56,88],"which":[59],"inform":[60],"on":[61],"risks,":[63],"are":[64],"not":[65],"well-aligned":[66],"practical":[68],"requirements":[69],"and":[70],"regulations":[71],"regarding":[72],"healthcare.":[76],"This":[77],"article":[78],"discusses":[79],"paradoxical":[81],"situation":[82],"where":[83],"designed":[87],"but":[91],"still":[94],"restricted.":[95],"We":[96],"also":[97],"discuss":[98],"how":[99],"field":[101],"should":[102],"move":[103],"forward":[104],"mitigate":[106],"this":[107],"issue.":[108]},"counts_by_year":[],"updated_date":"2026-08-21T09:56:20.448147","created_date":"2025-10-10T00:00:00"}
