{"id":"https://openalex.org/W2937579149","doi":"https://doi.org/10.1080/23294515.2019.1592264","title":"Broadening the Debate About Post-trial Access to Medical Interventions: A Qualitative Study of Participant Experiences at the End of a Trial Investigating a Medical Device to Support Type 1 Diabetes Self-Management","display_name":"Broadening the Debate About Post-trial Access to Medical Interventions: A Qualitative Study of Participant Experiences at the End of a Trial Investigating a Medical Device to Support Type 1 Diabetes Self-Management","publication_year":2019,"publication_date":"2019-04-03","ids":{"openalex":"https://openalex.org/W2937579149","doi":"https://doi.org/10.1080/23294515.2019.1592264","mag":"2937579149","pmid":"https://pubmed.ncbi.nlm.nih.gov/30986113"},"language":"en","primary_location":{"id":"doi:10.1080/23294515.2019.1592264","doi":"https://doi.org/10.1080/23294515.2019.1592264","is_oa":true,"landing_page_url":"https://doi.org/10.1080/23294515.2019.1592264","pdf_url":"https://www.tandfonline.com/doi/pdf/10.1080/23294515.2019.1592264?needAccess=true","source":{"id":"https://openalex.org/S2764502159","display_name":"AJOB Empirical Bioethics","issn_l":"2329-4515","issn":["2329-4515","2329-4523"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320547","host_organization_name":"Taylor & Francis","host_organization_lineage":["https://openalex.org/P4310320547","https://openalex.org/P4310320449"],"host_organization_lineage_names":["Taylor & Francis","Informa"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"AJOB Empirical Bioethics","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","datacite","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://www.tandfonline.com/doi/pdf/10.1080/23294515.2019.1592264?needAccess=true","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5058023337","display_name":"Julia Lawton","orcid":"https://orcid.org/0000-0002-8016-7374","observed_orcids":["https://orcid.org/0000-0002-8016-7374"]},"institutions":[{"id":"https://openalex.org/I98677209","display_name":"University of Edinburgh","ror":"https://ror.org/01nrxwf90","country_code":"GB","type":"education","lineage":["https://openalex.org/I98677209"]}],"countries":["GB"],"is_corresponding":true,"raw_author_name":"J. Lawton","raw_affiliation_strings":["Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;"],"raw_orcid":"https://orcid.org/0000-0002-8016-7374","affiliations":[{"raw_affiliation_string":"Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;","institution_ids":["https://openalex.org/I98677209"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5108654492","display_name":"Maxine Blackburn","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I98677209","display_name":"University of Edinburgh","ror":"https://ror.org/01nrxwf90","country_code":"GB","type":"education","lineage":["https://openalex.org/I98677209"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"M. Blackburn","raw_affiliation_strings":["Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;","institution_ids":["https://openalex.org/I98677209"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5056940301","display_name":"David Rankin","orcid":"https://orcid.org/0000-0002-5835-3402","observed_orcids":["https://orcid.org/0000-0002-5835-3402"]},"institutions":[{"id":"https://openalex.org/I98677209","display_name":"University of Edinburgh","ror":"https://ror.org/01nrxwf90","country_code":"GB","type":"education","lineage":["https://openalex.org/I98677209"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"D. Rankin","raw_affiliation_strings":["Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;","institution_ids":["https://openalex.org/I98677209"]}]},{"author_position":"middle","author":{"id":null,"display_name":"C. Werner","orcid":"https://orcid.org/0000-0003-2989-096X","observed_orcids":["https://orcid.org/0000-0003-2989-096X"]},"institutions":[{"id":"https://openalex.org/I98677209","display_name":"University of Edinburgh","ror":"https://ror.org/01nrxwf90","country_code":"GB","type":"education","lineage":["https://openalex.org/I98677209"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"C. Werner","raw_affiliation_strings":["Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;"],"raw_orcid":"https://orcid.org/0000-0003-2989-096X","affiliations":[{"raw_affiliation_string":"Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom;","institution_ids":["https://openalex.org/I98677209"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5013390056","display_name":"Conor Farrington","orcid":"https://orcid.org/0000-0002-8625-2684","observed_orcids":["https://orcid.org/0000-0002-8625-2684"]},"institutions":[{"id":"https://openalex.org/I241749","display_name":"University of Cambridge","ror":"https://ror.org/013meh722","country_code":"GB","type":"education","lineage":["https://openalex.org/I241749"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"C. Farrington","raw_affiliation_strings":["Cambridge Centre for Health Services Research, University of Cambridge, United Kingdom;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Cambridge Centre for Health Services Research, University of Cambridge, United Kingdom;","institution_ids":["https://openalex.org/I241749"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012170772","display_name":"Roman Hovorka","orcid":"https://orcid.org/0000-0003-2901-461X","observed_orcids":["https://orcid.org/0000-0003-2901-461X"]},"institutions":[{"id":"https://openalex.org/I241749","display_name":"University of Cambridge","ror":"https://ror.org/013meh722","country_code":"GB","type":"education","lineage":["https://openalex.org/I241749"]},{"id":"https://openalex.org/I4210116691","display_name":"Wellcome/MRC Institute of Metabolic Science","ror":"https://ror.org/0264dxb48","country_code":"GB","type":"facility","lineage":["https://openalex.org/I241749","https://openalex.org/I2802466933","https://openalex.org/I4210087105","https://openalex.org/I4210116691","https://openalex.org/I87048295","https://openalex.org/I90344618"]},{"id":"https://openalex.org/I87048295","display_name":"Wellcome Trust","ror":"https://ror.org/029chgv08","country_code":"GB","type":"nonprofit","lineage":["https://openalex.org/I87048295"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"R. Hovorka","raw_affiliation_strings":["Department of Paediatrics, University of Cambridge, Cambridge, United Kingdom;","Wellcome Trust-MRC Institute of Metabolic Science, University of Cambridge, Cambridge, United Kingdom;"],"raw_orcid":"https://orcid.org/0000-0003-2901-461X","affiliations":[{"raw_affiliation_string":"Department of Paediatrics, University of Cambridge, Cambridge, United Kingdom;","institution_ids":["https://openalex.org/I241749"]},{"raw_affiliation_string":"Wellcome Trust-MRC Institute of Metabolic Science, University of Cambridge, Cambridge, United Kingdom;","institution_ids":["https://openalex.org/I241749","https://openalex.org/I4210116691","https://openalex.org/I87048295"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5010384424","display_name":"Nina Hallowell","orcid":"https://orcid.org/0000-0002-7647-8524","observed_orcids":["https://orcid.org/0000-0002-7647-8524"]},"institutions":[{"id":"https://openalex.org/I40120149","display_name":"University of Oxford","ror":"https://ror.org/052gg0110","country_code":"GB","type":"education","lineage":["https://openalex.org/I40120149"]},{"id":"https://openalex.org/I4210162189","display_name":"Wellcome Centre for Ethics and Humanities","ror":"https://ror.org/05crdvn36","country_code":"GB","type":"facility","lineage":["https://openalex.org/I40120149","https://openalex.org/I4210162189","https://openalex.org/I87048295"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"N. Hallowell","raw_affiliation_strings":["Wellcome Centre for Ethics and Humanities and the Ethox Centre, Nuffield Department of Population Health, Big Data Institute, University of Oxford, Oxford, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Wellcome Centre for Ethics and Humanities and the Ethox Centre, Nuffield Department of Population Health, Big Data Institute, University of Oxford, Oxford, United Kingdom","institution_ids":["https://openalex.org/I40120149","https://openalex.org/I4210162189"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":6,"corresponding_author_ids":["https://openalex.org/A5058023337"],"corresponding_institution_ids":["https://openalex.org/I98677209"],"apc_list":null,"apc_paid":{"value":2269,"currency":"EUR","value_usd":2447},"fwci":3.223,"has_fulltext":true,"cited_by_count":24,"citation_normalized_percentile":{"value":0.91172373,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":96,"max":98},"biblio":{"volume":"10","issue":"2","first_page":"100","last_page":"112"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9883000254631042,"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":0.9883000254631042,"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/T13417","display_name":"Biomedical Ethics and Regulation","score":0.00800000037997961,"subfield":{"id":"https://openalex.org/subfields/2737","display_name":"Physiology"},"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/T13147","display_name":"Ethics and bioethics in healthcare","score":0.0019000000320374966,"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/post-trial-access","display_name":"post-trial access","score":0.8479999899864197},{"id":"https://openalex.org/keywords/artificial-pancreas","display_name":"artificial pancreas","score":0.5759999752044678},{"id":"https://openalex.org/keywords/type-1-diabetes","display_name":"type 1 diabetes","score":0.8989999890327454},{"id":"https://openalex.org/keywords/diabetes-self-management","display_name":"diabetes self-management","score":0.8640000224113464},{"id":"https://openalex.org/keywords/medical-device-trials","display_name":"medical device trials","score":0.6240000128746033},{"id":"https://openalex.org/keywords/psychological-harm","display_name":"psychological harm","score":0.5720000267028809},{"id":"https://openalex.org/keywords/emotional-harm","display_name":"emotional harm","score":0.7639999985694885},{"id":"https://openalex.org/keywords/deskilling","display_name":"deskilling","score":0.7950000166893005},{"id":"https://openalex.org/keywords/informed-consent","display_name":"informed consent","score":0.7329999804496765},{"id":"https://openalex.org/keywords/participant-experiences","display_name":"participant experiences","score":0.5479999780654907},{"id":"https://openalex.org/keywords/clinical-trial-ethics","display_name":"clinical trial ethics","score":0.4779999852180481}],"concepts":[{"id":"https://openalex.org/C27415008","wikidata":"https://www.wikidata.org/wiki/Q7256382","display_name":"Psychological intervention","level":2,"score":0.6235564351081848},{"id":"https://openalex.org/C168563851","wikidata":"https://www.wikidata.org/wiki/Q1436668","display_name":"Randomized controlled trial","level":2,"score":0.5827157497406006},{"id":"https://openalex.org/C139265228","wikidata":"https://www.wikidata.org/wiki/Q5283089","display_name":"Distress","level":2,"score":0.5178168416023254},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.5071430206298828},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5043312311172485},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.493040531873703},{"id":"https://openalex.org/C2777180221","wikidata":"https://www.wikidata.org/wiki/Q3025883","display_name":"Type 2 diabetes","level":3,"score":0.43214648962020874},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3418691158294678},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.32673218846321106},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.29180577397346497},{"id":"https://openalex.org/C555293320","wikidata":"https://www.wikidata.org/wiki/Q12206","display_name":"Diabetes mellitus","level":2,"score":0.2630665898323059},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.0},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C134018914","wikidata":"https://www.wikidata.org/wiki/Q162606","display_name":"Endocrinology","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000073278","descriptor_name":"Self-Management","qualifier_ui":"Q000379","qualifier_name":"methods","is_major_topic":true},{"descriptor_ui":"D000073278","descriptor_name":"Self-Management","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false},{"descriptor_ui":"D000079225","descriptor_name":"Psychological Distress","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000368","descriptor_name":"Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D001007","descriptor_name":"Anxiety","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D001786","descriptor_name":"Blood Glucose","qualifier_ui":"Q000378","qualifier_name":"metabolism","is_major_topic":false},{"descriptor_ui":"D003922","descriptor_name":"Diabetes Mellitus, Type 1","qualifier_ui":"Q000097","qualifier_name":"blood","is_major_topic":false},{"descriptor_ui":"D003922","descriptor_name":"Diabetes Mellitus, Type 1","qualifier_ui":"Q000188","qualifier_name":"drug therapy","is_major_topic":true},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006297","descriptor_name":"Health Services Accessibility","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":"D007332","descriptor_name":"Insulin Infusion Systems","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D007407","descriptor_name":"Interviews as Topic","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009042","descriptor_name":"Motivation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D015190","descriptor_name":"Blood Glucose Self-Monitoring","qualifier_ui":"Q000295","qualifier_name":"instrumentation","is_major_topic":true},{"descriptor_ui":"D015190","descriptor_name":"Blood Glucose Self-Monitoring","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false},{"descriptor_ui":"D028761","descriptor_name":"Withholding Treatment","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D035842","descriptor_name":"Research Subjects","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D055815","descriptor_name":"Young Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":5,"locations":[{"id":"doi:10.1080/23294515.2019.1592264","doi":"https://doi.org/10.1080/23294515.2019.1592264","is_oa":true,"landing_page_url":"https://doi.org/10.1080/23294515.2019.1592264","pdf_url":"https://www.tandfonline.com/doi/pdf/10.1080/23294515.2019.1592264?needAccess=true","source":{"id":"https://openalex.org/S2764502159","display_name":"AJOB Empirical Bioethics","issn_l":"2329-4515","issn":["2329-4515","2329-4523"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320547","host_organization_name":"Taylor & Francis","host_organization_lineage":["https://openalex.org/P4310320547","https://openalex.org/P4310320449"],"host_organization_lineage_names":["Taylor & Francis","Informa"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"AJOB Empirical Bioethics","raw_type":"journal-article"},{"id":"pmid:30986113","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/30986113","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,"listed_in":[],"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":"AJOB empirical bioethics","raw_type":"Journal Article"},{"id":"pmh:oai:www.repository.cam.ac.uk:1810/288534","doi":null,"is_oa":true,"landing_page_url":"https://www.repository.cam.ac.uk/handle/1810/288534","pdf_url":"https://www.repository.cam.ac.uk/handle/1810/288534","source":{"id":"https://openalex.org/S4306401777","display_name":"Apollo (University of Cambridge)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I241749","host_organization_name":"University of Cambridge","host_organization_lineage":["https://openalex.org/I241749"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Article"},{"id":"pmh:oai:pure.ed.ac.uk:publications/a427225b-ae37-4c9f-a2cf-a340bc6192b8","doi":null,"is_oa":true,"landing_page_url":"https://www.research.ed.ac.uk/en/publications/a427225b-ae37-4c9f-a2cf-a340bc6192b8","pdf_url":null,"source":{"id":"https://openalex.org/S4306400321","display_name":"Edinburgh Research Explorer (University of Edinburgh)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I98677209","host_organization_name":"University of Edinburgh","host_organization_lineage":["https://openalex.org/I98677209"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Lawton, J, Blackburn, M, Rankin, A, Werner, C, Farrington, C, Hovorka, R & Hallowell, N 2019, 'Broadening the debate about post-trial access to medical interventions: a qualitative study of participant experiences at the end of a trial investigating a medical device to support type 1 diabetes self-management', AJOB Empirical Bioethics , vol. 10, no. 2. https://doi.org/10.1080/23294515.2019.1592264","raw_type":"info:eu-repo/semantics/publishedVersion"},{"id":"doi:10.17863/cam.35819","doi":"https://doi.org/10.17863/cam.35819","is_oa":true,"landing_page_url":"https://doi.org/10.17863/cam.35819","pdf_url":null,"source":{"id":"https://openalex.org/S7407050737","display_name":"Apollo","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":"repository"},"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"}],"best_oa_location":{"id":"doi:10.1080/23294515.2019.1592264","doi":"https://doi.org/10.1080/23294515.2019.1592264","is_oa":true,"landing_page_url":"https://doi.org/10.1080/23294515.2019.1592264","pdf_url":"https://www.tandfonline.com/doi/pdf/10.1080/23294515.2019.1592264?needAccess=true","source":{"id":"https://openalex.org/S2764502159","display_name":"AJOB Empirical Bioethics","issn_l":"2329-4515","issn":["2329-4515","2329-4523"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320547","host_organization_name":"Taylor & Francis","host_organization_lineage":["https://openalex.org/P4310320547","https://openalex.org/P4310320449"],"host_organization_lineage_names":["Taylor & Francis","Informa"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"AJOB Empirical Bioethics","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.9476000070571899,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[{"id":"https://openalex.org/G4658378669","display_name":"Institute of Metabolic Science.","funder_award_id":"100574/Z/12/Z","funder_id":"https://openalex.org/F4320311904","funder_display_name":"Wellcome Trust"},{"id":"https://openalex.org/G7141862397","display_name":null,"funder_award_id":"100574/Z/12/Z","funder_id":"https://openalex.org/F4320306172","funder_display_name":"Juvenile Diabetes Research Foundation International"},{"id":"https://openalex.org/G8431774833","display_name":"Effect of closed loop insulin delivery from onset of diabetes in youth on progression of type 1 diabetes","funder_award_id":"14/23/09","funder_id":"https://openalex.org/F4320319990","funder_display_name":"National Institute for Health and Care Research"},{"id":"https://openalex.org/G8585681489","display_name":null,"funder_award_id":"146281","funder_id":"https://openalex.org/F4320321578","funder_display_name":"Cambridge University Hospitals"}],"funders":[{"id":"https://openalex.org/F4320306172","display_name":"Juvenile Diabetes Research Foundation International","ror":"https://ror.org/00vqxjy61"},{"id":"https://openalex.org/F4320307758","display_name":"Eli Lilly and Company","ror":"https://ror.org/01qat3289"},{"id":"https://openalex.org/F4320311904","display_name":"Wellcome Trust","ror":"https://ror.org/029chgv08"},{"id":"https://openalex.org/F4320319990","display_name":"National Institute for Health and Care Research","ror":"https://ror.org/0187kwz08"},{"id":"https://openalex.org/F4320321578","display_name":"Cambridge University Hospitals","ror":"https://ror.org/04v54gj93"},{"id":"https://openalex.org/F4320322436","display_name":"Novo Nordisk","ror":"https://ror.org/0435rc536"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2937579149.pdf","grobid_xml":"https://content.openalex.org/works/W2937579149.grobid-xml"},"referenced_works_count":40,"referenced_works":["https://openalex.org/W155592958","https://openalex.org/W1511052238","https://openalex.org/W1564616611","https://openalex.org/W1740475132","https://openalex.org/W1940010674","https://openalex.org/W1951999056","https://openalex.org/W2000117884","https://openalex.org/W2028152001","https://openalex.org/W2030442873","https://openalex.org/W2043993456","https://openalex.org/W2063704097","https://openalex.org/W2064039984","https://openalex.org/W2068170939","https://openalex.org/W2077683585","https://openalex.org/W2084812185","https://openalex.org/W2092608391","https://openalex.org/W2103216580","https://openalex.org/W2104667268","https://openalex.org/W2120082228","https://openalex.org/W2126771118","https://openalex.org/W2129797254","https://openalex.org/W2150060517","https://openalex.org/W2154456781","https://openalex.org/W2168630899","https://openalex.org/W2170627020","https://openalex.org/W2235691012","https://openalex.org/W2587189756","https://openalex.org/W2606677161","https://openalex.org/W2617858914","https://openalex.org/W2624457142","https://openalex.org/W2726799618","https://openalex.org/W2730137350","https://openalex.org/W2802855656","https://openalex.org/W2906454376","https://openalex.org/W2911860991","https://openalex.org/W4211047340","https://openalex.org/W4238863712","https://openalex.org/W4285719527","https://openalex.org/W4294738730","https://openalex.org/W4301078689"],"related_works":["https://openalex.org/W2797319187","https://openalex.org/W2947524601","https://openalex.org/W2587189756","https://openalex.org/W4310699980","https://openalex.org/W2995490071","https://openalex.org/W4389570350","https://openalex.org/W3160330996","https://openalex.org/W4401258487","https://openalex.org/W3099315997","https://openalex.org/W202644820"],"abstract_inverted_index":{"Increasing":[0],"ethical":[1,246],"attention":[2],"and":[3,95,112,139,172,186,191,201,222,235,259,262],"debate":[4,29],"is":[5,64],"focusing":[6],"on":[7],"whether":[8],"individuals":[9,49,109,279],"who":[10,53],"take":[11],"part":[12],"in":[13,36,55,194],"clinical":[14,57,265],"trials":[15,34],"should":[16],"be":[17,178,253],"given":[18],"access":[19],"to":[20,81,117,150,225,227,243,252,255,288],"post-trial":[21,192,249],"care.":[22],"However,":[23],"the":[24,103,115,119,137,181],"main":[25],"focus":[26],"of":[27,59,114,126,196,272],"this":[28,41,204],"has":[30],"been":[31,106,184],"upon":[32],"drug":[33],"undertaken":[35],"low-income":[37],"settings.":[38],"To":[39],"broaden":[40],"debate,":[42],"we":[43],"report":[44],"findings":[45,242],"from":[46,92,160,270,282],"interviews":[47],"with":[48,72],"(n":[50],"=":[51],"24)":[52],"participated":[54],"a":[56,60,65,144,162,199,220],"trial":[58,98,294],"closed-loop":[61,104,138,182,200,221],"system,":[62],"which":[63,101,146],"medical":[66],"device":[67],"under":[68],"development":[69],"for":[70],"people":[71],"type":[73],"1":[74],"diabetes":[75,132],"that":[76,175,245,267,278],"automatically":[77],"adjusts":[78],"blood":[79,216],"glucose":[80,217],"help":[82,289],"keep":[83],"it":[84],"within":[85],"clinically":[86],"recommended":[87],"ranges.":[88],"Individuals":[89],"were":[90,110],"recruited":[91],"UK":[93],"sites":[94],"interviewed":[96],"following":[97],"close-out,":[99],"at":[100],"point":[102],"had":[105,183],"withdrawn.":[107],"While":[108],"stoical":[111],"accepting":[113],"requirement":[116],"return":[118],"closed-loop,":[120],"they":[121,230],"also":[122,155,210,276],"conveyed":[123],"varying":[124],"degrees":[125],"distress.":[127],"Many":[128],"described":[129,156],"having":[130,140,197,224],"relaxed":[131],"management":[133],"practices":[134],"while":[135],"using":[136,161,219,228],"become":[141],"deskilled":[142],"as":[143,166,233],"consequence,":[145],"made":[147],"reverting":[148],"back":[149],"pre-trial":[151],"regimens":[152],"challenging.":[153],"Participants":[154,209],"unanticipated":[157],"consequences":[158],"arising":[159],"closed-loop.":[163],"As":[164],"well":[165],"deskilling,":[167],"these":[168,241],"included":[169],"experiencing":[170,214],"psychological":[171,258],"emotional":[173,260],"benefits":[174],"could":[176],"not":[177,263],"sustained":[179],"after":[180],"withdrawn":[185],"participants":[187],"reevaluating":[188],"their":[189],"pre-":[190],"life":[193,205],"light":[195],"used":[198],"now":[202,231],"perceiving":[203],"much":[206],"more":[207],"negatively.":[208],"voiced":[211],"frustrations":[212],"about":[213,248,284,293],"better":[215],"control":[218],"then":[223],"revert":[226],"what":[229],"saw":[232],"antiquated":[234],"imprecise":[236],"self-management":[237],"tools.":[238],"We":[239,275],"use":[240],"argue":[244],"debates":[247],"provisioning":[250],"need":[251],"broadened":[254],"consider":[256],"potential":[257,285],"harms,":[261,266],"just":[264],"may":[268,280],"result":[269],"withdrawal":[271],"investigated":[273],"treatments.":[274],"suggest":[277],"benefit":[281],"information":[283],"nonclinical":[286],"harms":[287],"make":[290],"informed":[291],"decisions":[292],"participation.":[295]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2024,"cited_by_count":3},{"year":2023,"cited_by_count":5},{"year":2022,"cited_by_count":4},{"year":2021,"cited_by_count":6},{"year":2020,"cited_by_count":4}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2019-04-25T00:00:00"}