{"id":"https://openalex.org/W4386242426","doi":"https://doi.org/10.1145/3600211.3604684","title":"Unpicking Epistemic Injustices in Digital Health: On the Implications of Designing Data-Driven Technologies for the Management of Long-Term Conditions","display_name":"Unpicking Epistemic Injustices in Digital Health: On the Implications of Designing Data-Driven Technologies for the Management of Long-Term Conditions","publication_year":2023,"publication_date":"2023-08-08","ids":{"openalex":"https://openalex.org/W4386242426","doi":"https://doi.org/10.1145/3600211.3604684"},"language":"en","primary_location":{"id":"doi:10.1145/3600211.3604684","is_oa":false,"landing_page_url":"https://doi.org/10.1145/3600211.3604684","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the 2023 AAAI/ACM Conference on AI, Ethics, and Society","raw_type":"proceedings-article"},"type":"article","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/A5056374070","display_name":"SJ Bennett","orcid":"https://orcid.org/0000-0002-8520-3194"},"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":"SJ Bennett","raw_affiliation_strings":["The University of Edinburgh, United Kingdom"],"affiliations":[{"raw_affiliation_string":"The University of Edinburgh, United Kingdom","institution_ids":["https://openalex.org/I98677209"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5051530841","display_name":"Caroline Claisse","orcid":"https://orcid.org/0000-0003-4002-6136"},"institutions":[{"id":"https://openalex.org/I84884186","display_name":"Newcastle University","ror":"https://ror.org/01kj2bm70","country_code":"GB","type":"education","lineage":["https://openalex.org/I84884186"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Caroline Claisse","raw_affiliation_strings":["Open Lab, Newcastle University, United Kingdom"],"affiliations":[{"raw_affiliation_string":"Open Lab, Newcastle University, United Kingdom","institution_ids":["https://openalex.org/I84884186"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5083504260","display_name":"Ewa Luger","orcid":"https://orcid.org/0000-0001-7882-9415"},"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":"Ewa Luger","raw_affiliation_strings":["The University of Edinburgh, United Kingdom"],"affiliations":[{"raw_affiliation_string":"The University of Edinburgh, United Kingdom","institution_ids":["https://openalex.org/I98677209"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5041558239","display_name":"Abigail Durrant","orcid":"https://orcid.org/0000-0003-4752-5376"},"institutions":[{"id":"https://openalex.org/I84884186","display_name":"Newcastle University","ror":"https://ror.org/01kj2bm70","country_code":"GB","type":"education","lineage":["https://openalex.org/I84884186"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Abigail C. Durrant","raw_affiliation_strings":["Open Lab, Newcastle University, United Kingdom"],"affiliations":[{"raw_affiliation_string":"Open Lab, Newcastle University, United Kingdom","institution_ids":["https://openalex.org/I84884186"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5056374070"],"corresponding_institution_ids":["https://openalex.org/I98677209"],"apc_list":null,"apc_paid":null,"fwci":2.3113,"has_fulltext":false,"cited_by_count":12,"citation_normalized_percentile":{"value":0.88611544,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":99},"biblio":{"volume":null,"issue":null,"first_page":"322","last_page":"332"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10082","display_name":"HIV/AIDS Research and Interventions","score":0.991100013256073,"subfield":{"id":"https://openalex.org/subfields/2725","display_name":"Infectious Diseases"},"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/T10082","display_name":"HIV/AIDS Research and Interventions","score":0.991100013256073,"subfield":{"id":"https://openalex.org/subfields/2725","display_name":"Infectious Diseases"},"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/T11639","display_name":"Mental Health and Patient Involvement","score":0.9587000012397766,"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/T11655","display_name":"HIV-related health complications and treatments","score":0.9110000133514404,"subfield":{"id":"https://openalex.org/subfields/2711","display_name":"Emergency Medicine"},"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/life-expectancy","display_name":"Life expectancy","score":0.4992654323577881},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.4871949553489685},{"id":"https://openalex.org/keywords/digital-health","display_name":"Digital health","score":0.4293321669101715},{"id":"https://openalex.org/keywords/human-immunodeficiency-virus","display_name":"Human immunodeficiency virus (HIV)","score":0.4207915663719177},{"id":"https://openalex.org/keywords/equity","display_name":"Equity (law)","score":0.41614609956741333},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"Quality of life (healthcare)","score":0.411823570728302},{"id":"https://openalex.org/keywords/engineering-ethics","display_name":"Engineering ethics","score":0.4107398986816406},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.397562175989151},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.3824770152568817},{"id":"https://openalex.org/keywords/sociology","display_name":"Sociology","score":0.3441007137298584},{"id":"https://openalex.org/keywords/public-relations","display_name":"Public relations","score":0.3299354910850525},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.2870951294898987},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.2550618052482605},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.20083150267601013},{"id":"https://openalex.org/keywords/engineering","display_name":"Engineering","score":0.16751554608345032},{"id":"https://openalex.org/keywords/psychotherapist","display_name":"Psychotherapist","score":0.11135846376419067}],"concepts":[{"id":"https://openalex.org/C133925201","wikidata":"https://www.wikidata.org/wiki/Q188419","display_name":"Life expectancy","level":3,"score":0.4992654323577881},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.4871949553489685},{"id":"https://openalex.org/C2780433410","wikidata":"https://www.wikidata.org/wiki/Q5276090","display_name":"Digital health","level":3,"score":0.4293321669101715},{"id":"https://openalex.org/C3013748606","wikidata":"https://www.wikidata.org/wiki/Q15787","display_name":"Human immunodeficiency virus (HIV)","level":2,"score":0.4207915663719177},{"id":"https://openalex.org/C199728807","wikidata":"https://www.wikidata.org/wiki/Q2578557","display_name":"Equity (law)","level":2,"score":0.41614609956741333},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.411823570728302},{"id":"https://openalex.org/C55587333","wikidata":"https://www.wikidata.org/wiki/Q1133029","display_name":"Engineering ethics","level":1,"score":0.4107398986816406},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.397562175989151},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.3824770152568817},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.3441007137298584},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.3299354910850525},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.2870951294898987},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2550618052482605},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.20083150267601013},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"score":0.16751554608345032},{"id":"https://openalex.org/C542102704","wikidata":"https://www.wikidata.org/wiki/Q183257","display_name":"Psychotherapist","level":1,"score":0.11135846376419067},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.0},{"id":"https://openalex.org/C149923435","wikidata":"https://www.wikidata.org/wiki/Q37732","display_name":"Demography","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1145/3600211.3604684","is_oa":false,"landing_page_url":"https://doi.org/10.1145/3600211.3604684","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the 2023 AAAI/ACM Conference on AI, Ethics, and Society","raw_type":"proceedings-article"}],"best_oa_location":null,"sustainable_development_goals":[],"awards":[{"id":"https://openalex.org/G4416447018","display_name":null,"funder_award_id":"EP/R033900/2","funder_id":"https://openalex.org/F4320334627","funder_display_name":"Engineering and Physical Sciences Research Council"},{"id":"https://openalex.org/G6286050206","display_name":null,"funder_award_id":"EP/R033900/1","funder_id":"https://openalex.org/F4320334627","funder_display_name":"Engineering and Physical Sciences Research Council"},{"id":"https://openalex.org/G7078623174","display_name":"INTUIT: 'Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV'","funder_award_id":"EP/R033900/2","funder_id":"https://openalex.org/F4320334627","funder_display_name":"Engineering and Physical Sciences Research Council"},{"id":"https://openalex.org/G8452545418","display_name":null,"funder_award_id":"unknown","funder_id":"https://openalex.org/F4320334627","funder_display_name":"Engineering and Physical Sciences Research Council"}],"funders":[{"id":"https://openalex.org/F4320334627","display_name":"Engineering and Physical Sciences Research Council","ror":"https://ror.org/0439y7842"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":59,"referenced_works":["https://openalex.org/W1534759433","https://openalex.org/W1945904666","https://openalex.org/W1986347911","https://openalex.org/W1991159879","https://openalex.org/W2007860239","https://openalex.org/W2033829462","https://openalex.org/W2057355312","https://openalex.org/W2059432510","https://openalex.org/W2085240774","https://openalex.org/W2095709171","https://openalex.org/W2103960362","https://openalex.org/W2148304943","https://openalex.org/W2148314152","https://openalex.org/W2261289103","https://openalex.org/W2264431745","https://openalex.org/W2405169300","https://openalex.org/W2467706247","https://openalex.org/W2468661109","https://openalex.org/W2597520020","https://openalex.org/W2754746795","https://openalex.org/W2795595430","https://openalex.org/W2807772431","https://openalex.org/W2921100359","https://openalex.org/W2943608867","https://openalex.org/W2981648679","https://openalex.org/W3003599720","https://openalex.org/W3004290126","https://openalex.org/W3030637260","https://openalex.org/W3038018847","https://openalex.org/W3047954551","https://openalex.org/W3049635907","https://openalex.org/W3081534642","https://openalex.org/W3089327259","https://openalex.org/W3093223973","https://openalex.org/W3094211126","https://openalex.org/W3119029619","https://openalex.org/W3132771424","https://openalex.org/W3135514117","https://openalex.org/W3135773605","https://openalex.org/W3158330824","https://openalex.org/W3159003756","https://openalex.org/W3162260607","https://openalex.org/W3162649252","https://openalex.org/W3163020165","https://openalex.org/W3189769971","https://openalex.org/W3192254170","https://openalex.org/W3207583521","https://openalex.org/W4200490733","https://openalex.org/W4205184245","https://openalex.org/W4205467669","https://openalex.org/W4206366110","https://openalex.org/W4210449292","https://openalex.org/W4220838917","https://openalex.org/W4225000233","https://openalex.org/W4254498041","https://openalex.org/W4281694757","https://openalex.org/W4283164474","https://openalex.org/W4294749602","https://openalex.org/W4300003134"],"related_works":["https://openalex.org/W16271281","https://openalex.org/W40019356","https://openalex.org/W2073743814","https://openalex.org/W2406455777","https://openalex.org/W3013519900","https://openalex.org/W4292066684","https://openalex.org/W2035174274","https://openalex.org/W2357219879","https://openalex.org/W2804256819","https://openalex.org/W1895899363"],"abstract_inverted_index":{"Applications":[0],"of":[1,8,33,62,123,150,157,181],"Artificial":[2],"Intelligence":[3],"(AI)":[4],"in":[5,52,85],"the":[6,60,66,147,155,170],"domain":[7],"Personal":[9],"Health":[10],"Informatics":[11],"(PHI)":[12],"offer":[13],"potential":[14],"avenues":[15],"for":[16,21,105,109,117,186,212],"personalised":[17],"treatment":[18,115],"and":[19,49,54,65,95,102,125,129,139,173,200,209],"support":[20],"people":[22,110,191],"living":[23,111,138],"with":[24,82,112,141,192],"long-term":[25],"conditions,":[26],"however,":[27],"they":[28],"also":[29],"present":[30],"a":[31],"number":[32],"ethical":[34,103,214],"challenges.":[35],"Whilst":[36,114],"participatory":[37],"approaches":[38],"can":[39,153],"help":[40],"mitigate":[41],"concerns":[42],"by":[43,59,69,133],"actively":[44],"involving":[45],"healthcare":[46],"professionals,":[47],"patients,":[48],"other":[50],"stakeholders":[51,83],"design":[53,156],"development,":[55],"these":[56,163],"are":[57],"constrained":[58],"limits":[61],"epistemic":[63,151],"standpoints":[64],"risks":[67],"posed":[68],"extrapolation":[70],"from":[71],"individuals":[72],"to":[73,99,161,207],"groups.":[74],"In":[75],"this":[76],"paper":[77],"we":[78],"draw":[79],"upon":[80],"interviews":[81],"involved":[84],"Human":[86],"Immunodeficiency":[87],"Virus":[88],"(HIV)":[89],"care,":[90],"including":[91],"clinicians,":[92],"insurance":[93],"providers":[94],"pharmaceutical":[96],"industry":[97],"representatives,":[98],"map":[100],"intentions":[101],"considerations":[104,215],"developing":[106],"PHI":[107],"tools":[108],"HIV.":[113],"efficacy":[116],"HIV":[118,142,193],"has":[119],"improved":[120],"patient":[121],"quality":[122],"life":[124,126],"expectancy,":[127],"management":[128],"care":[130],"is":[131,180],"complicated":[132],"knowledge":[134],"gaps":[135],"about":[136],"what":[137],"ageing":[140],"entails.":[143],"We":[144],"investigate":[145],"how":[146],"critical":[148],"concept":[149],"injustice":[152],"inform":[154],"data-driven":[158],"technologies":[159],"intended":[160],"address":[162],"gaps,":[164],"helping":[165,206],"orient":[166],"expert":[167],"perspectives":[168],"within":[169],"broader":[171],"structures":[172],"socio-historical":[174],"influences":[175],"that":[176],"shape":[177],"them.":[178],"This":[179],"particular":[182],"importance":[183],"when":[184],"designing":[185],"marginalized":[187],"populations":[188],"such":[189,216],"as":[190,217],"(i.e.":[194],"who":[195],"may":[196],"experience":[197],"social":[198],"stigma":[199],"be":[201],"under-resourced,":[202],"managing":[203],"multiple":[204],"conditions),":[205],"identify":[208],"better":[210],"account":[211],"fundamental":[213],"equity.":[218]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2025,"cited_by_count":10},{"year":2023,"cited_by_count":1}],"updated_date":"2026-04-10T15:06:20.359241","created_date":"2025-10-10T00:00:00"}