{"id":"https://openalex.org/W4403087547","doi":"https://doi.org/10.1055/a-2432-0329","title":"Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders","display_name":"Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders","publication_year":2024,"publication_date":"2024-10-03","ids":{"openalex":"https://openalex.org/W4403087547","doi":"https://doi.org/10.1055/a-2432-0329","pmid":"https://pubmed.ncbi.nlm.nih.gov/39362293"},"language":"en","primary_location":{"id":"doi:10.1055/a-2432-0329","is_oa":false,"landing_page_url":"https://doi.org/10.1055/a-2432-0329","pdf_url":null,"source":{"id":"https://openalex.org/S187139995","display_name":"Applied Clinical Informatics","issn_l":"1869-0327","issn":["1869-0327"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320000","host_organization_name":"Thieme Medical Publishers (Germany)","host_organization_lineage":["https://openalex.org/P4310320000"],"host_organization_lineage_names":["Thieme Medical Publishers (Germany)"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Applied Clinical Informatics","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11779532/","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5091100335","display_name":"Brian R. Jackson","orcid":"https://orcid.org/0000-0001-7902-3990"},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Brian R. Jackson","raw_affiliation_strings":["University of Utah, Salt Lake City, Utah, United States","Departments of Pathology and Biomedical Informatics, University of Utah, Salt Lake City, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Utah, Salt Lake City, Utah, United States","institution_ids":["https://openalex.org/I223532165"]},{"raw_affiliation_string":"Departments of Pathology and Biomedical Informatics, University of Utah, Salt Lake City, United States","institution_ids":["https://openalex.org/I223532165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5103064855","display_name":"Bonnie J. Kaplan","orcid":"https://orcid.org/0000-0003-1911-0472"},"institutions":[{"id":"https://openalex.org/I32971472","display_name":"Yale University","ror":"https://ror.org/03v76x132","country_code":"US","type":"education","lineage":["https://openalex.org/I32971472"]},{"id":"https://openalex.org/I2800355730","display_name":"Ethics and Public Policy Center","ror":"https://ror.org/00bn59524","country_code":"US","type":"other","lineage":["https://openalex.org/I2800355730"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Bonnie Kaplan","raw_affiliation_strings":["Department of Biostatistics (Health Informatics), Bioethics Center, Information Society Project, Solomon Center for Health Law and Policy, Center for Biomedical Data Science, and Program for Biomedical Ethics, Yale University, Yale School of Public Health, New Haven, Connecticut, United States","Yale Interdisciplinary Center for Bioethics, Yale University, New Haven, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Biostatistics (Health Informatics), Bioethics Center, Information Society Project, Solomon Center for Health Law and Policy, Center for Biomedical Data Science, and Program for Biomedical Ethics, Yale University, Yale School of Public Health, New Haven, Connecticut, United States","institution_ids":["https://openalex.org/I2800355730"]},{"raw_affiliation_string":"Yale Interdisciplinary Center for Bioethics, Yale University, New Haven, United States","institution_ids":["https://openalex.org/I32971472"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5024127399","display_name":"Richard Schreiber","orcid":"https://orcid.org/0000-0002-6138-7048"},"institutions":[{"id":"https://openalex.org/I82783531","display_name":"Penn State Milton S. Hershey Medical Center","ror":"https://ror.org/01h22ap11","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I82783531"]},{"id":"https://openalex.org/I322107071","display_name":"Pennsylvania Department of Transportation","ror":"https://ror.org/02j0q7e02","country_code":"US","type":"government","lineage":["https://openalex.org/I322107071"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I126744593","display_name":"University of Maryland, Baltimore","ror":"https://ror.org/04rq5mt64","country_code":"US","type":"education","lineage":["https://openalex.org/I126744593"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Richard Schreiber","raw_affiliation_strings":["Department of Biomedical Informatics and Data Science, Johns Hopkins School of Medicine, University of Maryland Graduate School of Medicine, Baltimore, Maryland, United States","Information Services, Penn State Health, Camp Hill, Pennsylvania, United States","University of Maryland Graduate School, Clinical Informatics Master of Science Program, Baltimore, Maryland, United States","Informatics, Penn State Health Milton S Hershey Medical Center, Hershey, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Biomedical Informatics and Data Science, Johns Hopkins School of Medicine, University of Maryland Graduate School of Medicine, Baltimore, Maryland, United States","institution_ids":["https://openalex.org/I2799853436","https://openalex.org/I126744593","https://openalex.org/I145311948"]},{"raw_affiliation_string":"Information Services, Penn State Health, Camp Hill, Pennsylvania, United States","institution_ids":["https://openalex.org/I322107071"]},{"raw_affiliation_string":"University of Maryland Graduate School, Clinical Informatics Master of Science Program, Baltimore, Maryland, United States","institution_ids":["https://openalex.org/I126744593"]},{"raw_affiliation_string":"Informatics, Penn State Health Milton S Hershey Medical Center, Hershey, United States","institution_ids":["https://openalex.org/I82783531"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5046878474","display_name":"Paul R. DeMuro","orcid":"https://orcid.org/0000-0002-8781-4247"},"institutions":[{"id":"https://openalex.org/I2802357859","display_name":"Episcopal School of Dallas","ror":"https://ror.org/03kbkcf70","country_code":"US","type":"education","lineage":["https://openalex.org/I2802357859"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Paul R. DeMuro","raw_affiliation_strings":["Epstein Becker Green, Dallas, Texas, United States","Epstein Becker and Green PC, Wilson, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Epstein Becker Green, Dallas, Texas, United States","institution_ids":["https://openalex.org/I2802357859"]},{"raw_affiliation_string":"Epstein Becker and Green PC, Wilson, United States","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5036526706","display_name":"Victoria Nichols-Johnson","orcid":null},"institutions":[{"id":"https://openalex.org/I196729704","display_name":"Southern Illinois University School of Medicine","ror":"https://ror.org/0232r4451","country_code":"US","type":"education","lineage":["https://openalex.org/I196729704","https://openalex.org/I2801502357"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Victoria Nichols-Johnson","raw_affiliation_strings":["Southern Illinois University School of Medicine, Springfield, Illinois, United States","OB/Gyn, Prof Emerita, Southern Illinois University School of Medicine, Springfield, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Southern Illinois University School of Medicine, Springfield, Illinois, United States","institution_ids":["https://openalex.org/I196729704"]},{"raw_affiliation_string":"OB/Gyn, Prof Emerita, Southern Illinois University School of Medicine, Springfield, United States","institution_ids":["https://openalex.org/I196729704"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5039261828","display_name":"Larry Ozeran","orcid":null},"institutions":[{"id":"https://openalex.org/I4210116015","display_name":"Woodland Hills Medical Center","ror":"https://ror.org/02bx0ak73","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210116015"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Larry Ozeran","raw_affiliation_strings":["Clinical Informatics Inc., Woodland, California, United States","Clinical Informatics, Inc., Davis, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Clinical Informatics Inc., Woodland, California, United States","institution_ids":["https://openalex.org/I4210116015"]},{"raw_affiliation_string":"Clinical Informatics, Inc., Davis, United States","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5006479392","display_name":"Anthony Solomonides","orcid":"https://orcid.org/0000-0003-2117-2461"},"institutions":[{"id":"https://openalex.org/I1339509835","display_name":"NorthShore University HealthSystem","ror":"https://ror.org/04tpp9d61","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1339509835"]},{"id":"https://openalex.org/I4210119687","display_name":"Evanston Hospital","ror":"https://ror.org/02nh10f55","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1339509835","https://openalex.org/I40347166","https://openalex.org/I4210119687"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Anthony Solomonides","raw_affiliation_strings":["Research Institute, Endeavor Health, Evanston, Illinois, United States","APCIG, NorthShore University HealthSystem Research Institute, Evanston, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Research Institute, Endeavor Health, Evanston, Illinois, United States","institution_ids":["https://openalex.org/I4210119687"]},{"raw_affiliation_string":"APCIG, NorthShore University HealthSystem Research Institute, Evanston, United States","institution_ids":["https://openalex.org/I1339509835"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5067363466","display_name":"Ross Koppel","orcid":"https://orcid.org/0000-0002-8235-9900"},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]},{"id":"https://openalex.org/I63190737","display_name":"University at Buffalo, State University of New York","ror":"https://ror.org/01y64my43","country_code":"US","type":"education","lineage":["https://openalex.org/I63190737"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Ross Koppel","raw_affiliation_strings":["Department of Biomedical Informatics, Jacobs School of Medicine, University at Buffalo, Buffalo, New York, United States","Department of Biomedical Informatics, Perelman School of Medicine and The Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Biomedical Informatics, Jacobs School of Medicine, University at Buffalo, Buffalo, New York, United States","institution_ids":["https://openalex.org/I63190737"]},{"raw_affiliation_string":"Department of Biomedical Informatics, Perelman School of Medicine and The Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, United States","institution_ids":["https://openalex.org/I79576946"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":8,"corresponding_author_ids":["https://openalex.org/A5091100335"],"corresponding_institution_ids":["https://openalex.org/I223532165"],"apc_list":null,"apc_paid":null,"fwci":2.5747,"has_fulltext":false,"cited_by_count":5,"citation_normalized_percentile":{"value":0.89977098,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":98},"biblio":{"volume":"16","issue":"01","first_page":"090","last_page":"100"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.6600000262260437,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.6600000262260437,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10350","display_name":"Electronic Health Records Systems","score":0.08030000329017639,"subfield":{"id":"https://openalex.org/subfields/3605","display_name":"Health Information Management"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10764","display_name":"Privacy-Preserving Technologies in Data","score":0.03290000185370445,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.7885749340057373},{"id":"https://openalex.org/keywords/healthcare-delivery","display_name":"Healthcare delivery","score":0.4305272698402405},{"id":"https://openalex.org/keywords/medline","display_name":"MEDLINE","score":0.4167774021625519},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.4056655466556549},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.39731574058532715},{"id":"https://openalex.org/keywords/public-relations","display_name":"Public relations","score":0.3657393753528595},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.32183021306991577},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.2125566601753235},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.20196813344955444}],"concepts":[{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.7885749340057373},{"id":"https://openalex.org/C3018457447","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Healthcare delivery","level":3,"score":0.4305272698402405},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.4167774021625519},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4056655466556549},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.39731574058532715},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.3657393753528595},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.32183021306991577},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.2125566601753235},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.20196813344955444},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D003695","descriptor_name":"Delivery of Health Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D005791","descriptor_name":"Patient Care","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"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":"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":"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":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007407","descriptor_name":"Interviews as Topic","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007407","descriptor_name":"Interviews as Topic","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007407","descriptor_name":"Interviews as Topic","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007407","descriptor_name":"Interviews as Topic","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007857","descriptor_name":"Leadership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.1055/a-2432-0329","is_oa":false,"landing_page_url":"https://doi.org/10.1055/a-2432-0329","pdf_url":null,"source":{"id":"https://openalex.org/S187139995","display_name":"Applied Clinical Informatics","issn_l":"1869-0327","issn":["1869-0327"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320000","host_organization_name":"Thieme Medical Publishers (Germany)","host_organization_lineage":["https://openalex.org/P4310320000"],"host_organization_lineage_names":["Thieme Medical Publishers (Germany)"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Applied Clinical Informatics","raw_type":"journal-article"},{"id":"pmid:39362293","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/39362293","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":"Applied clinical informatics","raw_type":null},{"id":"pmh:oai:pubmedcentral.nih.gov:11779532","is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11779532/","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Appl Clin Inform","raw_type":"Text"}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:11779532","is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11779532/","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Appl Clin Inform","raw_type":"Text"},"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":27,"referenced_works":["https://openalex.org/W185644262","https://openalex.org/W2071480942","https://openalex.org/W2119520080","https://openalex.org/W2134258571","https://openalex.org/W2134266749","https://openalex.org/W2146875405","https://openalex.org/W2165067028","https://openalex.org/W2311325352","https://openalex.org/W2749020484","https://openalex.org/W2963693643","https://openalex.org/W2969107720","https://openalex.org/W2969961810","https://openalex.org/W2982749475","https://openalex.org/W3099696215","https://openalex.org/W3122280911","https://openalex.org/W3125532702","https://openalex.org/W3157485606","https://openalex.org/W3162007253","https://openalex.org/W3184999087","https://openalex.org/W4320716102","https://openalex.org/W4323065351","https://openalex.org/W4364378425","https://openalex.org/W4368341809","https://openalex.org/W4378977198","https://openalex.org/W4386272230","https://openalex.org/W4388045712","https://openalex.org/W4400969508"],"related_works":["https://openalex.org/W4299647711","https://openalex.org/W4401558279","https://openalex.org/W2102338924","https://openalex.org/W2155059751","https://openalex.org/W2227310033","https://openalex.org/W4400150925","https://openalex.org/W2039238466","https://openalex.org/W1496116492","https://openalex.org/W2065627960","https://openalex.org/W4232810390"],"abstract_inverted_index":{"OBJECTIVES:":[0],"This":[1],"study":[2],"aimed":[3],"to":[4,34,43,115,119,126,191,210,245],"(1)":[5,144],"empirically":[6],"investigate":[7],"current":[8],"practices":[9,232,268],"and":[10,28,30,37,47,59,74,86,92,110,114,125,184,186,225,255,261,272,282,297,302,306],"analyze":[11],"ethical":[12,75,253,274],"dimensions":[13],"of":[14,100,151,157,222],"clinical":[15,146,198,266],"data":[16,51,106,121,147,199],"sharing":[17,50,160,221,284],"by":[18,72,201],"health":[19,40,68,112,116,141,203,256],"care":[20,41,69,142,257],"organizations":[21,42,83],"for":[22,39,108,122,130,159,300,304],"uses":[23],"other":[24],"than":[25],"treatment,":[26],"payment,":[27],"operations;":[29],"(2)":[31,153],"make":[32,165],"recommendations":[33],"inform":[35],"research":[36],"policy":[38],"protect":[44,192],"patients'":[45],"privacy":[46],"autonomy":[48],"when":[49],"with":[52,128,148,269],"unrelated":[53],"third":[54],"parties.":[55],"METHODS:":[56],"Semistructured":[57],"interviews":[58],"surveys":[60],"involving":[61],"24":[62],"informatics":[63],"leaders":[64],"from":[65,104],"22":[66],"U.S.":[67,238],"organizations,":[70,152],"accompanied":[71],"thematic":[73],"analyses.":[76],"RESULTS:":[77],"We":[78],"found":[79],"considerable":[80],"heterogeneity":[81],"across":[82,291],"in":[84,94,286],"policies":[85,167,260],"practices.":[87,262],"Respondents":[88],"understood":[89],"\"data":[90],"sharing\"":[91],"\"research\"":[93],"very":[95],"different":[96],"ways.":[97],"Their":[98],"interpretations":[99],"these":[101],"terms":[102],"ranged":[103],"making":[105],"available":[107],"academic":[109],"public":[111],"uses,":[113],"information":[117],"exchanges;":[118],"selling":[120],"corporate":[123],"research;":[124],"contracting":[127],"aggregators":[129],"future":[131],"resale":[132],"or":[133],"use.":[134],"The":[135],"nine":[136],"interview":[137],"themes":[138],"were":[139,195],"that":[140],"organizations:":[143],"share":[145],"many":[149],"types":[150],"have":[154,171],"a":[155],"variety":[156],"motivations":[158],"data,":[161,224],"(3)":[162],"do":[163],"not":[164,228],"data-sharing":[166,174,208,231,259,267,287,292,305],"readily":[168],"available,":[169],"(4)":[170],"widely":[172],"varying":[173],"approval":[175,293],"processes,":[176,294],"(5)":[177],"most":[178],"commonly":[179],"rely":[180],"on":[181],"Health":[182],"Insurance":[183],"Portability":[185],"Accountability":[187],"Act":[188],"(HIPAA)":[189],"de-identification":[190],"privacy,":[193],"(6)":[194],"concerned":[196],"about":[197],"use":[200],"electronic":[202],"record":[204],"vendors,":[205],"(7)":[206],"lacked":[207],"transparency":[209,296],"the":[211,234,237],"general":[212],"public,":[213],"(8)":[214],"allowed":[215],"individual":[216],"patients":[217],"little":[218],"control":[219],"over":[220],"their":[223],"(9)":[226],"had":[227],"yet":[229],"changed":[230],"within":[233],"year":[235],"following":[236],"Supreme":[239],"Court":[240],"2022":[241],"decision":[242],"denying":[243],"rights":[244],"abortion.":[246],"CONCLUSION:":[247],"Our":[248],"analysis":[249],"identified":[250],"gaps":[251],"between":[252],"principles":[254],"organizations'":[258],"To":[263],"better":[264,289],"align":[265],"patient":[270],"expectations":[271],"biomedical":[273],"principles,":[275],"we":[276],"recommend":[277],"updating":[278],"HIPAA,":[279],"including":[280],"re-identification":[281],"upstream":[283],"restrictions":[285],"contracts,":[288],"coordination":[290],"fuller":[295],"opt-out":[298],"options":[299],"patients,":[301],"accountability":[303],"consequent":[307],"harms.":[308]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2025,"cited_by_count":3},{"year":2024,"cited_by_count":1}],"updated_date":"2026-05-06T08:25:59.206177","created_date":"2025-10-10T00:00:00"}