{"id":"https://openalex.org/W4407815242","doi":"https://doi.org/10.3233/978-1-61499-794-8-109","title":"Patient Perceptions About Data Sharing & Privacy: Insights from ActionADE","display_name":"Patient Perceptions About Data Sharing & Privacy: Insights from ActionADE","publication_year":2017,"publication_date":"2017-01-01","ids":{"openalex":"https://openalex.org/W4407815242","doi":"https://doi.org/10.3233/978-1-61499-794-8-109"},"language":"en","primary_location":{"id":"doi:10.3233/978-1-61499-794-8-109","is_oa":false,"landing_page_url":"https://doi.org/10.3233/978-1-61499-794-8-109","pdf_url":null,"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":null,"license_id":null,"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"],"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/A5116365030","display_name":"Small Serena S.","orcid":null},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Small Serena S.","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5109987090","display_name":"Peddie David","orcid":null},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Peddie David","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5116365031","display_name":"Ackerley Christine","orcid":null},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Ackerley Christine","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5056827706","display_name":"Rania M. Hathout","orcid":"https://orcid.org/0000-0001-9153-4355"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Hohl Corinne M.","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5081206253","display_name":"B. Parker Ellen","orcid":"https://orcid.org/0000-0002-5114-7593"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Balka Ellen","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":0.81139093,"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":0.9786999821662903,"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":0.9786999821662903,"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/T13048","display_name":"Patient Dignity and Privacy","score":0.9696000218391418,"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/internet-privacy","display_name":"Internet privacy","score":0.622745931148529},{"id":"https://openalex.org/keywords/perception","display_name":"Perception","score":0.5004556179046631},{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.48895466327667236},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.4848254919052124},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.21129807829856873},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.18835356831550598},{"id":"https://openalex.org/keywords/neuroscience","display_name":"Neuroscience","score":0.09443995356559753},{"id":"https://openalex.org/keywords/alternative-medicine","display_name":"Alternative medicine","score":0.07978233695030212}],"concepts":[{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.622745931148529},{"id":"https://openalex.org/C26760741","wikidata":"https://www.wikidata.org/wiki/Q160402","display_name":"Perception","level":2,"score":0.5004556179046631},{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.48895466327667236},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.4848254919052124},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.21129807829856873},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.18835356831550598},{"id":"https://openalex.org/C169760540","wikidata":"https://www.wikidata.org/wiki/Q207011","display_name":"Neuroscience","level":1,"score":0.09443995356559753},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.07978233695030212},{"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:10.3233/978-1-61499-794-8-109","is_oa":false,"landing_page_url":"https://doi.org/10.3233/978-1-61499-794-8-109","pdf_url":null,"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":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"}],"best_oa_location":null,"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4391375266","https://openalex.org/W2899084033","https://openalex.org/W2748952813","https://openalex.org/W2390279801","https://openalex.org/W4391913857","https://openalex.org/W2358668433","https://openalex.org/W4396701345","https://openalex.org/W2376932109","https://openalex.org/W2001405890","https://openalex.org/W4396696052"],"abstract_inverted_index":{"Information":[0],"communication":[1,61],"technologies":[2],"(ICTs)":[3],"may":[4],"improve":[5],"health":[6,19,23,101],"delivery":[7],"by":[8],"enhancing":[9],"informational":[10],"continuity":[11],"of":[12,18,46,51,62,76,84],"care":[13],"and":[14,25,39,49,60,98],"enabling":[15],"secondary":[16],"use":[17],"data":[20],"including":[21],"public":[22],"surveillance":[24],"research.":[26],"ICTs":[27],"also":[28],"introduce":[29],"concerns":[30,71],"related":[31],"to":[32,91,95],"privacy.":[33],"In":[34],"this":[35,41],"paper,":[36],"we":[37],"examine":[38],"address":[40],"tension":[42],"in":[43],"the":[44,47,58,74,93],"context":[45],"development":[48],"implementation":[50],"a":[52,82],"novel":[53],"platform":[54],"that":[55,89],"will":[56,80],"enable":[57],"documentation":[59],"patient-specific":[63],"ADE":[64],"information,":[65],"titled":[66],"ActionADE.":[67],"We":[68],"explored":[69],"privacy":[70],"qualitatively":[72],"from":[73],"perspective":[75],"patients.":[77],"Our":[78],"findings":[79],"inform":[81],"series":[83],"recommendations":[85],"for":[86],"system":[87],"design":[88],"seek":[90],"balance":[92],"need":[94],"both":[96],"share":[97],"protect":[99],"personal":[100],"information.":[102]},"counts_by_year":[],"updated_date":"2026-08-21T09:56:20.448147","created_date":"2025-10-10T00:00:00"}