{"id":"https://openalex.org/W2906829211","doi":"https://doi.org/10.28929/103","title":"Patient Perspectives on Data Sharing","display_name":"Patient Perspectives on Data Sharing","publication_year":2019,"publication_date":"2019-01-03","ids":{"openalex":"https://openalex.org/W2906829211","doi":"https://doi.org/10.28929/103","mag":"2906829211"},"language":"en","primary_location":{"id":"doi:10.28929/103","doi":"https://doi.org/10.28929/103","is_oa":false,"landing_page_url":"https://doi.org/10.28929/103","pdf_url":null,"source":{"id":"https://openalex.org/S4306488930","display_name":"NIH Collaboratory eBooks","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"ebook platform"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"The Living Textbook","raw_type":"book-chapter"},"volume":null,"type":"book-chapter","indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5040344572","display_name":"Gregory E. Simon","orcid":"https://orcid.org/0000-0003-2859-5467","observed_orcids":["https://orcid.org/0000-0003-2859-5467"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Gregory Simon","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5084956002","display_name":"Gloria D. Coronado","orcid":"https://orcid.org/0000-0003-1130-6542","observed_orcids":["https://orcid.org/0000-0003-1130-6542"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Gloria Coronado","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5018566551","display_name":"Lynn DeBar","orcid":"https://orcid.org/0000-0002-1632-9340","observed_orcids":["https://orcid.org/0000-0002-1632-9340","https://orcid.org/0000-0001-9191-9706"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Lynn DeBar","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5051085359","display_name":"Laura M. Dember","orcid":"https://orcid.org/0000-0002-9735-7473","observed_orcids":["https://orcid.org/0000-0002-9735-7473"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Laura Dember","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5066247381","display_name":"Beverly B. Green","orcid":"https://orcid.org/0000-0003-3040-3436","observed_orcids":["https://orcid.org/0000-0003-3040-3436"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Beverly Green","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5046304079","display_name":"Susan S. Huang","orcid":"https://orcid.org/0000-0001-6748-3447","observed_orcids":["https://orcid.org/0000-0001-6748-3447","https://orcid.org/0009-0002-1524-9004"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Susan Huang","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5061809927","display_name":"Jeffrey G. Jarvik","orcid":"https://orcid.org/0000-0002-0528-3455","observed_orcids":["https://orcid.org/0000-0002-0528-3455"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jeffrey Jarvik","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5084644208","display_name":"Vincent Mor","orcid":"https://orcid.org/0000-0003-0084-1267","observed_orcids":["https://orcid.org/0000-0003-0084-1267"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Vincent Mor","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5088658941","display_name":"Joakim Ramsberg","orcid":"https://orcid.org/0000-0002-2578-832X","observed_orcids":["https://orcid.org/0000-0002-2578-832X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Joakim Ramsberg","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089869042","display_name":"Edward Joel Septimus","orcid":"https://orcid.org/0000-0002-0102-3330","observed_orcids":["https://orcid.org/0000-0002-0102-3330"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Edward Septimus","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5008971014","display_name":"Migu\u00e9l V\u00e1zquez","orcid":"https://orcid.org/0000-0002-5713-1058","observed_orcids":["https://orcid.org/0000-0002-5713-1058"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Miguel Vazquez","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5021911687","display_name":"William M. Vollmer","orcid":"https://orcid.org/0000-0003-1216-323X","observed_orcids":["https://orcid.org/0000-0003-1216-323X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"William Vollmer","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5019895496","display_name":"Douglas Zatzick","orcid":"https://orcid.org/0000-0001-7339-1020","observed_orcids":["https://orcid.org/0000-0001-7339-1020"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Douglas Zatzick","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012849300","display_name":"Adrian F. Hernandez","orcid":"https://orcid.org/0000-0003-3387-9616","observed_orcids":["https://orcid.org/0000-0003-3387-9616"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Adrian Hernandez","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5014967450","display_name":"Richard Platt","orcid":"https://orcid.org/0000-0002-3248-3583","observed_orcids":["https://orcid.org/0000-0002-3248-3583"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Richard Platt","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"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":0.01767152,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9115999937057495,"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":0.9115999937057495,"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":0.050700001418590546,"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/T11937","display_name":"Research Data Management Practices","score":0.009800000116229057,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/patient-perspectives","display_name":"patient perspectives","score":0.847000002861023},{"id":"https://openalex.org/keywords/data-sharing","display_name":"data sharing","score":0.9369999766349792},{"id":"https://openalex.org/keywords/research-data-sharing","display_name":"research data sharing","score":0.6690000295639038},{"id":"https://openalex.org/keywords/patient-engagement","display_name":"patient engagement","score":0.5210000276565552}],"concepts":[{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.5307519435882568},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.362450510263443},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.34579145908355713},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2002732753753662},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.05464959144592285},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.28929/103","doi":"https://doi.org/10.28929/103","is_oa":false,"landing_page_url":"https://doi.org/10.28929/103","pdf_url":null,"source":{"id":"https://openalex.org/S4306488930","display_name":"NIH Collaboratory eBooks","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"ebook platform"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"The Living Textbook","raw_type":"book-chapter"}],"best_oa_location":null,"sustainable_development_goals":[],"sustainable_development_goals_aurora":[],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2899084033","https://openalex.org/W2748952813","https://openalex.org/W2390279801","https://openalex.org/W2358668433","https://openalex.org/W2376932109","https://openalex.org/W2001405890","https://openalex.org/W2382290278","https://openalex.org/W2350741829","https://openalex.org/W2130043461","https://openalex.org/W2530322880"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-10-14T16:39:01.820549","created_date":"2025-10-10T00:00:00"}