{"id":"https://openalex.org/W7161807070","doi":"https://doi.org/10.1145/3788079","title":"We Need Granular Sharing of De-Identified Data\u2014But Will Patients Engage? Investigating Health System Leaders' and Patients' Perspectives on A Patient-Controlled Data-Sharing Platform CSCW043","display_name":"We Need Granular Sharing of De-Identified Data\u2014But Will Patients Engage? Investigating Health System Leaders' and Patients' Perspectives on A Patient-Controlled Data-Sharing Platform CSCW043","publication_year":2026,"publication_date":"2026-04-30","ids":{"openalex":"https://openalex.org/W7161807070","doi":"https://doi.org/10.1145/3788079"},"language":"en","primary_location":{"id":"doi:10.1145/3788079","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3788079","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},"type":"article","indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.1145/3788079","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5100731597","display_name":"Xi Lu","orcid":"https://orcid.org/0000-0002-7868-273X"},"institutions":[{"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":"Xi Lu","raw_affiliation_strings":["University at Buffalo, SUNY"],"raw_orcid":"https://orcid.org/0000-0002-7868-273X","affiliations":[{"raw_affiliation_string":"University at Buffalo, SUNY","institution_ids":["https://openalex.org/I63190737"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5136540369","display_name":"Di Hu","orcid":"https://orcid.org/0000-0002-2842-1478"},"institutions":[{"id":"https://openalex.org/I204250578","display_name":"University of California, Irvine","ror":"https://ror.org/04gyf1771","country_code":"US","type":"education","lineage":["https://openalex.org/I204250578"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Di Hu","raw_affiliation_strings":["University of California, Irvine"],"raw_orcid":"https://orcid.org/0000-0002-2842-1478","affiliations":[{"raw_affiliation_string":"University of California, Irvine","institution_ids":["https://openalex.org/I204250578"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5129696100","display_name":"An T. Nguyen","orcid":null},"institutions":[{"id":"https://openalex.org/I1282927834","display_name":"Cedars-Sinai Medical Center","ror":"https://ror.org/02pammg90","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1282927834"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"An T. Nguyen","raw_affiliation_strings":["Cedars-Sinai Medical Center"],"raw_orcid":"https://orcid.org/0000-0003-2408-6307","affiliations":[{"raw_affiliation_string":"Cedars-Sinai Medical Center","institution_ids":["https://openalex.org/I1282927834"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5016676517","display_name":"Brad Morse","orcid":"https://orcid.org/0000-0002-1080-3961"},"institutions":[{"id":"https://openalex.org/I51713134","display_name":"University of Colorado Anschutz Medical Campus","ror":"https://ror.org/03wmf1y16","country_code":"US","type":"education","lineage":["https://openalex.org/I51713134"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Brad Morse","raw_affiliation_strings":["University of Colorado Anschutz Medical Campus"],"raw_orcid":"https://orcid.org/0000-0002-1080-3961","affiliations":[{"raw_affiliation_string":"University of Colorado Anschutz Medical Campus","institution_ids":["https://openalex.org/I51713134"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5033615276","display_name":"Lisa M. Schilling","orcid":"https://orcid.org/0000-0002-6878-189X"},"institutions":[{"id":"https://openalex.org/I51713134","display_name":"University of Colorado Anschutz Medical Campus","ror":"https://ror.org/03wmf1y16","country_code":"US","type":"education","lineage":["https://openalex.org/I51713134"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lisa M. Schilling","raw_affiliation_strings":["University of Colorado Anschutz Medical Campus"],"raw_orcid":"https://orcid.org/0000-0002-6878-189X","affiliations":[{"raw_affiliation_string":"University of Colorado Anschutz Medical Campus","institution_ids":["https://openalex.org/I51713134"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5136576936","display_name":"Kai Zheng","orcid":"https://orcid.org/0000-0003-4121-4948"},"institutions":[{"id":"https://openalex.org/I204250578","display_name":"University of California, Irvine","ror":"https://ror.org/04gyf1771","country_code":"US","type":"education","lineage":["https://openalex.org/I204250578"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Kai Zheng","raw_affiliation_strings":["University of California Irvine"],"raw_orcid":"https://orcid.org/0000-0003-4121-4948","affiliations":[{"raw_affiliation_string":"University of California Irvine","institution_ids":["https://openalex.org/I204250578"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5135480058","display_name":"Michelle S. Keller","orcid":"https://orcid.org/0000-0002-8157-7586"},"institutions":[{"id":"https://openalex.org/I1174212","display_name":"University of Southern California","ror":"https://ror.org/03taz7m60","country_code":"US","type":"education","lineage":["https://openalex.org/I1174212"]},{"id":"https://openalex.org/I2800817003","display_name":"California Southern University","ror":"https://ror.org/058zz0t50","country_code":"US","type":"education","lineage":["https://openalex.org/I2800817003"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Michelle S. Keller","raw_affiliation_strings":["University of Southern California"],"raw_orcid":"https://orcid.org/0000-0002-8157-7586","affiliations":[{"raw_affiliation_string":"University of Southern California","institution_ids":["https://openalex.org/I2800817003","https://openalex.org/I1174212"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5136590946","display_name":"Lucila Ohno-Machado","orcid":"https://orcid.org/0000-0002-8005-7327"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Lucila Ohno-Machado","raw_affiliation_strings":["Yale"],"raw_orcid":"https://orcid.org/0000-0002-8005-7327","affiliations":[{"raw_affiliation_string":"Yale","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5136516644","display_name":"Yunan Chen","orcid":"https://orcid.org/0000-0003-4056-3820"},"institutions":[{"id":"https://openalex.org/I204250578","display_name":"University of California, Irvine","ror":"https://ror.org/04gyf1771","country_code":"US","type":"education","lineage":["https://openalex.org/I204250578"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Yunan Chen","raw_affiliation_strings":["University of California Irvine"],"raw_orcid":"https://orcid.org/0000-0003-4056-3820","affiliations":[{"raw_affiliation_string":"University of California Irvine","institution_ids":["https://openalex.org/I204250578"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":9,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.81324972,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"10","issue":"2","first_page":"1","last_page":"33"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11639","display_name":"Mental Health and Patient Involvement","score":0.2071000039577484,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11639","display_name":"Mental Health and Patient Involvement","score":0.2071000039577484,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"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/T10350","display_name":"Electronic Health Records Systems","score":0.16740000247955322,"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/T10582","display_name":"Ethics in Clinical Research","score":0.14640000462532043,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/transparency","display_name":"Transparency (behavior)","score":0.8557999730110168},{"id":"https://openalex.org/keywords/autonomy","display_name":"Autonomy","score":0.7267000079154968},{"id":"https://openalex.org/keywords/control","display_name":"Control (management)","score":0.44350001215934753},{"id":"https://openalex.org/keywords/informed-consent","display_name":"Informed consent","score":0.4381999969482422},{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.4196000099182129},{"id":"https://openalex.org/keywords/ehealth","display_name":"eHealth","score":0.3319999873638153}],"concepts":[{"id":"https://openalex.org/C2780233690","wikidata":"https://www.wikidata.org/wiki/Q535347","display_name":"Transparency (behavior)","level":2,"score":0.8557999730110168},{"id":"https://openalex.org/C65414064","wikidata":"https://www.wikidata.org/wiki/Q484105","display_name":"Autonomy","level":2,"score":0.7267000079154968},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.47269999980926514},{"id":"https://openalex.org/C2775924081","wikidata":"https://www.wikidata.org/wiki/Q55608371","display_name":"Control (management)","level":2,"score":0.44350001215934753},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.44119998812675476},{"id":"https://openalex.org/C68122502","wikidata":"https://www.wikidata.org/wiki/Q764527","display_name":"Informed consent","level":3,"score":0.4381999969482422},{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.4196000099182129},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.40939998626708984},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.39890000224113464},{"id":"https://openalex.org/C202645933","wikidata":"https://www.wikidata.org/wiki/Q4930","display_name":"eHealth","level":3,"score":0.3319999873638153},{"id":"https://openalex.org/C43091099","wikidata":"https://www.wikidata.org/wiki/Q1067788","display_name":"Through-the-lens metering","level":3,"score":0.3319000005722046},{"id":"https://openalex.org/C2988170871","wikidata":"https://www.wikidata.org/wiki/Q11000047","display_name":"Healthcare system","level":3,"score":0.3138999938964844},{"id":"https://openalex.org/C2778843546","wikidata":"https://www.wikidata.org/wiki/Q3097973","display_name":"Health literacy","level":3,"score":0.30959999561309814},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.3070000112056732},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2976999878883362},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.2948000133037567},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.2809999883174896},{"id":"https://openalex.org/C55587333","wikidata":"https://www.wikidata.org/wiki/Q1133029","display_name":"Engineering ethics","level":1,"score":0.2761000096797943},{"id":"https://openalex.org/C194995250","wikidata":"https://www.wikidata.org/wiki/Q531136","display_name":"Affordance","level":2,"score":0.26600000262260437}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1145/3788079","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3788079","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.1145/3788079","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3788079","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/4","display_name":"Quality Education","score":0.8960667848587036}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":109,"referenced_works":["https://openalex.org/W1499041445","https://openalex.org/W1973448226","https://openalex.org/W1995039629","https://openalex.org/W1999061866","https://openalex.org/W2011965411","https://openalex.org/W2017648122","https://openalex.org/W2021831768","https://openalex.org/W2033291789","https://openalex.org/W2034781998","https://openalex.org/W2036418928","https://openalex.org/W2039691998","https://openalex.org/W2044180071","https://openalex.org/W2049188870","https://openalex.org/W2050361346","https://openalex.org/W2082859644","https://openalex.org/W2083384763","https://openalex.org/W2094612961","https://openalex.org/W2111504995","https://openalex.org/W2123755352","https://openalex.org/W2134258571","https://openalex.org/W2134867895","https://openalex.org/W2138550232","https://openalex.org/W2160730315","https://openalex.org/W2176268810","https://openalex.org/W2215564155","https://openalex.org/W2290835535","https://openalex.org/W2317668397","https://openalex.org/W2398352708","https://openalex.org/W2528685687","https://openalex.org/W2587766627","https://openalex.org/W2588312088","https://openalex.org/W2588678436","https://openalex.org/W2604176114","https://openalex.org/W2610373936","https://openalex.org/W2611253299","https://openalex.org/W2611339414","https://openalex.org/W2747828394","https://openalex.org/W2754389372","https://openalex.org/W2756385527","https://openalex.org/W2772743714","https://openalex.org/W2792818891","https://openalex.org/W2795595430","https://openalex.org/W2796354040","https://openalex.org/W2806876255","https://openalex.org/W2844894817","https://openalex.org/W2894597935","https://openalex.org/W2899052597","https://openalex.org/W2921902116","https://openalex.org/W2923757114","https://openalex.org/W2935480159","https://openalex.org/W2941062144","https://openalex.org/W2941215319","https://openalex.org/W2954281596","https://openalex.org/W2954922474","https://openalex.org/W2955808457","https://openalex.org/W2964331637","https://openalex.org/W2982749475","https://openalex.org/W2999136551","https://openalex.org/W3013747730","https://openalex.org/W3021970994","https://openalex.org/W3025234571","https://openalex.org/W3031645576","https://openalex.org/W3093528676","https://openalex.org/W3095612184","https://openalex.org/W3098569636","https://openalex.org/W3104748189","https://openalex.org/W3115166768","https://openalex.org/W3120326442","https://openalex.org/W3120753872","https://openalex.org/W3121273931","https://openalex.org/W3124701710","https://openalex.org/W3130201156","https://openalex.org/W3160445063","https://openalex.org/W3161670349","https://openalex.org/W3161737286","https://openalex.org/W3162643724","https://openalex.org/W3163252847","https://openalex.org/W3163820877","https://openalex.org/W3185964679","https://openalex.org/W3191855410","https://openalex.org/W3200759624","https://openalex.org/W3205056362","https://openalex.org/W3205909232","https://openalex.org/W4200349112","https://openalex.org/W4212836581","https://openalex.org/W4220960941","https://openalex.org/W4226161351","https://openalex.org/W4226267185","https://openalex.org/W4230874191","https://openalex.org/W4232488826","https://openalex.org/W4285722314","https://openalex.org/W4294031812","https://openalex.org/W4297659087","https://openalex.org/W4308643689","https://openalex.org/W4309617721","https://openalex.org/W4322616538","https://openalex.org/W4366547424","https://openalex.org/W4366547479","https://openalex.org/W4366550030","https://openalex.org/W4368341809","https://openalex.org/W4384933387","https://openalex.org/W4387605999","https://openalex.org/W4387606232","https://openalex.org/W4387857504","https://openalex.org/W4391673370","https://openalex.org/W4396230904","https://openalex.org/W4396832640","https://openalex.org/W4396833227","https://openalex.org/W4396833718"],"related_works":[],"abstract_inverted_index":{"Patient-controlled":[0],"data-sharing":[1],"systems":[2,153],"are":[3],"increasingly":[4],"promoted":[5],"as":[6,126,139],"a":[7,56,60,67,79,93],"way":[8],"to":[9,95,164],"empower":[10],"patients":[11,27,122],"with":[12,73,81],"greater":[13],"autonomy":[14],"over":[15,41],"their":[16,100],"health":[17,29,75],"data.":[18],"Yet":[19],"it":[20],"remains":[21],"unclear":[22],"how":[23],"different":[24],"stakeholders,":[25],"especially":[26],"and":[28,35,65,78,98,109,118,131,142,162,167],"system":[30,76],"leaders,":[31],"perceive":[32],"the":[33,42,89,113],"benefits":[34],"challenges":[36],"of":[37,44,59,91,115],"enabling":[38],"granular":[39,110],"control":[40,111,141],"sharing":[43],"de-identified":[45],"medical":[46],"data":[47],"for":[48,149],"research.":[49],"To":[50],"address":[51],"this":[52],"gap,":[53],"we":[54],"developed":[55],"high-fidelity":[57],"prototype":[58],"patient-controlled,":[61],"web-based":[62],"consent":[63,117],"platform":[64,94],"conducted":[66],"two-phase":[68],"mixed-methods":[69],"study:":[70],"semi-structured":[71],"interviews":[72],"16":[74],"leaders":[77],"survey":[80],"523":[82],"patient":[83],"participants.":[84],"While":[85],"both":[86],"groups":[87],"appreciated":[88],"potential":[90,129],"such":[92,138],"enhance":[96],"transparency":[97,108],"autonomy,":[99],"views":[101],"diverged":[102],"in":[103],"meaningful":[104],"ways.":[105],"Leaders":[106],"viewed":[107],"through":[112],"lens":[114],"informed":[116],"institutional":[119],"ethics,":[120],"whereas":[121],"interpreted":[123],"these":[124],"factors":[125],"safeguards":[127],"against":[128],"risks":[130],"uncertainties.":[132],"Our":[133],"findings":[134],"underscore":[135],"critical":[136],"tensions":[137],"individual":[140],"research":[143],"integrity.":[144],"We":[145],"offer":[146],"design":[147],"implications":[148],"building":[150],"trustworthy,":[151],"context-aware":[152],"that":[154],"support":[155],"flexible":[156],"granularity,":[157],"provide":[158],"ongoing":[159],"benefit\u2011centered":[160],"transparency,":[161],"adapt":[163],"diverse":[165],"literacy":[166],"privacy":[168],"needs.":[169]},"counts_by_year":[],"updated_date":"2026-06-11T09:08:48.828518","created_date":"2026-05-21T00:00:00"}
