{"id":"https://openalex.org/W3161025475","doi":"https://doi.org/10.1145/3411763.3443438","title":"Towards Responsible Data Practices in Digital Health: A case study of an open source community's journey","display_name":"Towards Responsible Data Practices in Digital Health: A case study of an open source community's journey","publication_year":2021,"publication_date":"2021-05-08","ids":{"openalex":"https://openalex.org/W3161025475","doi":"https://doi.org/10.1145/3411763.3443438","mag":"3161025475"},"language":"en","primary_location":{"id":"doi:10.1145/3411763.3443438","is_oa":false,"landing_page_url":"https://doi.org/10.1145/3411763.3443438","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Extended Abstracts of the 2021 CHI Conference on Human Factors in Computing Systems","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/A5082678373","display_name":"Elizabeth Dunbar","orcid":"https://orcid.org/0000-0003-2483-7625"},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Elizabeth Dunbar","raw_affiliation_strings":["Department of Human Centered Design and Engineering University of Washington, United States"],"affiliations":[{"raw_affiliation_string":"Department of Human Centered Design and Engineering University of Washington, United States","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5059914310","display_name":"Helen Elizabeth Olsen","orcid":"https://orcid.org/0000-0003-1255-5508"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Helen Elizabeth Olsen","raw_affiliation_strings":["Medic Mobile, United States"],"affiliations":[{"raw_affiliation_string":"Medic Mobile, United States","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5087575552","display_name":"Erika Salomon","orcid":"https://orcid.org/0000-0003-4064-7266"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Erika Salomon","raw_affiliation_strings":["Medic Mobile, United States"],"affiliations":[{"raw_affiliation_string":"Medic Mobile, United States","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5036395521","display_name":"Shreya Bhatt","orcid":null},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Shreya Bhatt","raw_affiliation_strings":["Medic Mobile, India"],"affiliations":[{"raw_affiliation_string":"Medic Mobile, India","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5058353884","display_name":"Regina Mutuku","orcid":null},"institutions":[{"id":"https://openalex.org/I4210126849","display_name":"Medic Mobile","ror":"https://ror.org/044ga3f28","country_code":"KE","type":"nonprofit","lineage":["https://openalex.org/I4210126849"]}],"countries":["KE"],"is_corresponding":false,"raw_author_name":"Regina Mutuku","raw_affiliation_strings":["Medic Mobile, Kenya"],"affiliations":[{"raw_affiliation_string":"Medic Mobile, Kenya","institution_ids":["https://openalex.org/I4210126849"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5052277092","display_name":"Beatrice Wasunna","orcid":"https://orcid.org/0000-0003-4185-8399"},"institutions":[{"id":"https://openalex.org/I4210126849","display_name":"Medic Mobile","ror":"https://ror.org/044ga3f28","country_code":"KE","type":"nonprofit","lineage":["https://openalex.org/I4210126849"]}],"countries":["KE"],"is_corresponding":false,"raw_author_name":"Beatrice Wasunna","raw_affiliation_strings":["Medic Mobile, Kenya"],"affiliations":[{"raw_affiliation_string":"Medic Mobile, Kenya","institution_ids":["https://openalex.org/I4210126849"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5108493082","display_name":"Jacqueline Edwards","orcid":null},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jacqueline Edwards","raw_affiliation_strings":["Medic Mobile, United States"],"affiliations":[{"raw_affiliation_string":"Medic Mobile, United States","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5086071862","display_name":"Beth Kolko","orcid":null},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Beth Kolko","raw_affiliation_strings":["Human Centered Design &amp; Engineering University of Washington, United States"],"affiliations":[{"raw_affiliation_string":"Human Centered Design &amp; Engineering University of Washington, United States","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5017927065","display_name":"Isaac Holeman","orcid":"https://orcid.org/0000-0002-9072-4162"},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Isaac Holeman","raw_affiliation_strings":["Department of Global Health University of Washington, United States"],"affiliations":[{"raw_affiliation_string":"Department of Global Health University of Washington, United States","institution_ids":["https://openalex.org/I201448701"]}]}],"institutions":[],"countries_distinct_count":2,"institutions_distinct_count":9,"corresponding_author_ids":["https://openalex.org/A5082678373"],"corresponding_institution_ids":["https://openalex.org/I201448701"],"apc_list":null,"apc_paid":null,"fwci":1.427,"has_fulltext":false,"cited_by_count":7,"citation_normalized_percentile":{"value":0.83694813,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":98},"biblio":{"volume":null,"issue":null,"first_page":"1","last_page":"8"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11446","display_name":"Mobile Health and mHealth Applications","score":0.9988999962806702,"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/T11446","display_name":"Mobile Health and mHealth Applications","score":0.9988999962806702,"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/T13194","display_name":"ICT in Developing Communities","score":0.993399977684021,"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"}},{"id":"https://openalex.org/T11045","display_name":"Privacy, Security, and Data Protection","score":0.9805999994277954,"subfield":{"id":"https://openalex.org/subfields/3312","display_name":"Sociology and Political Science"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/operationalization","display_name":"Operationalization","score":0.6758993864059448},{"id":"https://openalex.org/keywords/cognitive-reframing","display_name":"Cognitive reframing","score":0.6590128540992737},{"id":"https://openalex.org/keywords/public-relations","display_name":"Public relations","score":0.4980461597442627},{"id":"https://openalex.org/keywords/digital-health","display_name":"Digital health","score":0.4569554328918457},{"id":"https://openalex.org/keywords/privacy-by-design","display_name":"Privacy by Design","score":0.4474062919616699},{"id":"https://openalex.org/keywords/open-data","display_name":"Open data","score":0.426099568605423},{"id":"https://openalex.org/keywords/formative-assessment","display_name":"Formative assessment","score":0.41305744647979736},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.39591261744499207},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.390657901763916},{"id":"https://openalex.org/keywords/internet-privacy","display_name":"Internet privacy","score":0.3794354200363159},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.37011200189590454},{"id":"https://openalex.org/keywords/information-privacy","display_name":"Information privacy","score":0.35055315494537354},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.3070371448993683},{"id":"https://openalex.org/keywords/sociology","display_name":"Sociology","score":0.23458844423294067},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.1866176724433899},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.12140214443206787}],"concepts":[{"id":"https://openalex.org/C9354725","wikidata":"https://www.wikidata.org/wiki/Q286017","display_name":"Operationalization","level":2,"score":0.6758993864059448},{"id":"https://openalex.org/C187029079","wikidata":"https://www.wikidata.org/wiki/Q958679","display_name":"Cognitive reframing","level":2,"score":0.6590128540992737},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.4980461597442627},{"id":"https://openalex.org/C2780433410","wikidata":"https://www.wikidata.org/wiki/Q5276090","display_name":"Digital health","level":3,"score":0.4569554328918457},{"id":"https://openalex.org/C193934123","wikidata":"https://www.wikidata.org/wiki/Q7246028","display_name":"Privacy by Design","level":3,"score":0.4474062919616699},{"id":"https://openalex.org/C2780535194","wikidata":"https://www.wikidata.org/wiki/Q309901","display_name":"Open data","level":2,"score":0.426099568605423},{"id":"https://openalex.org/C42525527","wikidata":"https://www.wikidata.org/wiki/Q1209955","display_name":"Formative assessment","level":2,"score":0.41305744647979736},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.39591261744499207},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.390657901763916},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.3794354200363159},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.37011200189590454},{"id":"https://openalex.org/C123201435","wikidata":"https://www.wikidata.org/wiki/Q456632","display_name":"Information privacy","level":2,"score":0.35055315494537354},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.3070371448993683},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.23458844423294067},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.1866176724433899},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.12140214443206787},{"id":"https://openalex.org/C111472728","wikidata":"https://www.wikidata.org/wiki/Q9471","display_name":"Epistemology","level":1,"score":0.0},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.0},{"id":"https://openalex.org/C138885662","wikidata":"https://www.wikidata.org/wiki/Q5891","display_name":"Philosophy","level":0,"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/C19417346","wikidata":"https://www.wikidata.org/wiki/Q7922","display_name":"Pedagogy","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1145/3411763.3443438","is_oa":false,"landing_page_url":"https://doi.org/10.1145/3411763.3443438","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Extended Abstracts of the 2021 CHI Conference on Human Factors in Computing Systems","raw_type":"proceedings-article"}],"best_oa_location":null,"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":22,"referenced_works":["https://openalex.org/W1507976894","https://openalex.org/W1867619869","https://openalex.org/W1981143130","https://openalex.org/W2104980728","https://openalex.org/W2114312861","https://openalex.org/W2126264646","https://openalex.org/W2149328406","https://openalex.org/W2160708061","https://openalex.org/W2287484099","https://openalex.org/W2295344864","https://openalex.org/W2507185191","https://openalex.org/W2517330007","https://openalex.org/W2611651185","https://openalex.org/W2802220410","https://openalex.org/W2894545087","https://openalex.org/W2953855402","https://openalex.org/W2979239620","https://openalex.org/W3010334244","https://openalex.org/W3045524564","https://openalex.org/W3046675142","https://openalex.org/W3064311635","https://openalex.org/W6769062770"],"related_works":["https://openalex.org/W2061896288","https://openalex.org/W1965599462","https://openalex.org/W2025581759","https://openalex.org/W2256481674","https://openalex.org/W2011143448","https://openalex.org/W2417845289","https://openalex.org/W2944195030","https://openalex.org/W3118029303","https://openalex.org/W4383617227","https://openalex.org/W2171996415"],"abstract_inverted_index":{"In":[0,54],"recent":[1],"years,":[2],"privacy":[3],"and":[4,16,32,42,50,85,100,110,132,138,167,194],"data":[5,20,30,39,98,105,164,180,199],"rights":[6,31],"have":[7],"garnered":[8],"growing":[9],"attention":[10],"in":[11,83,93,196],"public":[12],"discourse,":[13],"policy":[14],"making,":[15],"scholarly":[17],"research.":[18],"New":[19],"protection":[21,165],"laws":[22],"are":[23],"being":[24],"rolled":[25],"out":[26],"globally":[27],"to":[28,158,168],"codify":[29],"ensure":[33],"individual":[34],"control":[35],"over":[36],"how":[37],"personal":[38],"is":[40,147],"shared":[41],"used.":[43],"This":[44,182],"evolving":[45],"landscape":[46,96],"presents":[47],"several":[48],"opportunities":[49],"challenges":[51],"for":[52,80,103,173,190],"healthcare.":[53],"this":[55,90],"case":[56,91,145,183],"study,":[57],"we":[58],"outline":[59],"a":[60,128,133,170],"design":[61,124],"research":[62],"agenda":[63],"that":[64,107,148,176],"emerged":[65],"from":[66,117],"the":[67,94,101,118,154,162,187],"practical":[68],"needs":[69],"of":[70,97,121,135,143,153,161],"an":[71,151],"open":[72],"source":[73],"community":[74,81],"focused":[75],"on":[76],"digital":[77,191],"health":[78,82,192],"software":[79,175],"low-":[84],"middle-income":[86],"countries.":[87],"We":[88,114],"situate":[89],"study":[92,146,184],"global":[95],"regulations,":[99],"call":[102],"responsible":[104,179],"practices":[106],"go":[108],"above":[109],"beyond":[111],"regulatory":[112],"compliance.":[113],"share":[115],"findings":[116],"formative":[119],"stages":[120],"our":[122,144],"multi-stage":[123],"process,":[125],"which":[126],"include":[127],"scoping":[129],"literature":[130],"review":[131],"reframing":[134],"institutional":[136,155],"policies":[137],"procedures.":[139],"A":[140],"primary":[141],"contribution":[142],"it":[149],"offers":[150],"example":[152],"\u2018pre-work\u2019":[156],"necessary":[157],"make":[159],"sense":[160],"complex":[163],"landscape,":[166],"chart":[169],"path":[171],"forward":[172],"designing":[174],"better":[177],"supports":[178],"practices.":[181],"also":[185],"articulates":[186],"important":[188],"role":[189],"designers":[193],"implementers":[195],"operationalizing":[197],"patient":[198],"rights.":[200]},"counts_by_year":[{"year":2025,"cited_by_count":2},{"year":2024,"cited_by_count":4},{"year":2022,"cited_by_count":1}],"updated_date":"2025-11-06T03:46:38.306776","created_date":"2025-10-10T00:00:00"}
