{"id":"https://openalex.org/W2947649908","doi":"https://doi.org/10.1186/s12911-019-0799-7","title":"Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research","display_name":"Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research","publication_year":2019,"publication_date":"2019-04-25","ids":{"openalex":"https://openalex.org/W2947649908","doi":"https://doi.org/10.1186/s12911-019-0799-7","mag":"2947649908","pmid":"https://pubmed.ncbi.nlm.nih.gov/31023321"},"language":"en","primary_location":{"id":"doi:10.1186/s12911-019-0799-7","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-019-0799-7","pdf_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-019-0799-7","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-019-0799-7","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5059523133","display_name":"Katharina Beier","orcid":"https://orcid.org/0000-0002-0948-0341"},"institutions":[{"id":"https://openalex.org/I74656192","display_name":"University of G\u00f6ttingen","ror":"https://ror.org/01y9bpm73","country_code":"DE","type":"education","lineage":["https://openalex.org/I74656192"]}],"countries":["DE"],"is_corresponding":true,"raw_author_name":"Katharina Beier","raw_affiliation_strings":["Department of Medical Ethics and History of Medicine, Georg-August-University G\u00f6ttingen, University Medical Center, Humboldtallee 36, 37073, G\u00f6ttingen, Germany. katharina.beier@medizin.uni-goettingen.de","Department of Medical Ethics and History of Medicine, Georg-August-University G\u00f6ttingen, University Medical Center, Humboldtallee 36, 37073, G\u00f6ttingen, Germany"],"affiliations":[{"raw_affiliation_string":"Department of Medical Ethics and History of Medicine, Georg-August-University G\u00f6ttingen, University Medical Center, Humboldtallee 36, 37073, G\u00f6ttingen, Germany. katharina.beier@medizin.uni-goettingen.de","institution_ids":["https://openalex.org/I74656192"]},{"raw_affiliation_string":"Department of Medical Ethics and History of Medicine, Georg-August-University G\u00f6ttingen, University Medical Center, Humboldtallee 36, 37073, G\u00f6ttingen, Germany","institution_ids":["https://openalex.org/I74656192"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5030037065","display_name":"Mark Schweda","orcid":"https://orcid.org/0000-0003-3270-6561"},"institutions":[{"id":"https://openalex.org/I129877168","display_name":"Carl von Ossietzky Universit\u00e4t Oldenburg","ror":"https://ror.org/033n9gh91","country_code":"DE","type":"education","lineage":["https://openalex.org/I129877168"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Mark Schweda","raw_affiliation_strings":["Department of Health Services Research, Carl von Ossietzky University of Oldenburg, School for Medicine and Health Sciences, Ammerl\u00e4nder Heerstr. 114-118, 26111, Oldenburg, Germany"],"affiliations":[{"raw_affiliation_string":"Department of Health Services Research, Carl von Ossietzky University of Oldenburg, School for Medicine and Health Sciences, Ammerl\u00e4nder Heerstr. 114-118, 26111, Oldenburg, Germany","institution_ids":["https://openalex.org/I129877168"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5021907897","display_name":"Silke Schicktanz","orcid":"https://orcid.org/0000-0001-9627-752X"},"institutions":[{"id":"https://openalex.org/I74656192","display_name":"University of G\u00f6ttingen","ror":"https://ror.org/01y9bpm73","country_code":"DE","type":"education","lineage":["https://openalex.org/I74656192"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Silke Schicktanz","raw_affiliation_strings":["Department of Medical Ethics and History of Medicine, Georg-August-University G\u00f6ttingen, University Medical Center, Humboldtallee 36, 37073, G\u00f6ttingen, Germany"],"affiliations":[{"raw_affiliation_string":"Department of Medical Ethics and History of Medicine, Georg-August-University G\u00f6ttingen, University Medical Center, Humboldtallee 36, 37073, G\u00f6ttingen, Germany","institution_ids":["https://openalex.org/I74656192"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5059523133"],"corresponding_institution_ids":["https://openalex.org/I74656192"],"apc_list":{"value":1570,"currency":"GBP","value_usd":1925},"apc_paid":{"value":1661,"currency":"EUR","value_usd":1791},"fwci":6.4383,"has_fulltext":true,"cited_by_count":58,"citation_normalized_percentile":{"value":0.96757266,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":94,"max":99},"biblio":{"volume":"19","issue":"1","first_page":"90","last_page":"90"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9998999834060669,"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":0.9998999834060669,"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/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.9961000084877014,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11639","display_name":"Mental Health and Patient Involvement","score":0.9954000115394592,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/context","display_name":"Context (archaeology)","score":0.6260274648666382},{"id":"https://openalex.org/keywords/bioethics","display_name":"Bioethics","score":0.5604687929153442},{"id":"https://openalex.org/keywords/engineering-ethics","display_name":"Engineering ethics","score":0.5590328574180603},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.5498542189598083},{"id":"https://openalex.org/keywords/health-informatics","display_name":"Health informatics","score":0.5348564386367798},{"id":"https://openalex.org/keywords/citizen-journalism","display_name":"Citizen journalism","score":0.5019614696502686},{"id":"https://openalex.org/keywords/medical-research","display_name":"Medical research","score":0.46433815360069275},{"id":"https://openalex.org/keywords/participatory-action-research","display_name":"Participatory action research","score":0.4613916873931885},{"id":"https://openalex.org/keywords/politics","display_name":"Politics","score":0.45757055282592773},{"id":"https://openalex.org/keywords/public-relations","display_name":"Public relations","score":0.4284566640853882},{"id":"https://openalex.org/keywords/corporate-governance","display_name":"Corporate governance","score":0.4271712899208069},{"id":"https://openalex.org/keywords/big-data","display_name":"Big data","score":0.42473888397216797},{"id":"https://openalex.org/keywords/sociology","display_name":"Sociology","score":0.39801862835884094},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.33370524644851685},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.29873326420783997},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.1431473195552826},{"id":"https://openalex.org/keywords/business","display_name":"Business","score":0.12448889017105103},{"id":"https://openalex.org/keywords/law","display_name":"Law","score":0.08269500732421875}],"concepts":[{"id":"https://openalex.org/C2779343474","wikidata":"https://www.wikidata.org/wiki/Q3109175","display_name":"Context (archaeology)","level":2,"score":0.6260274648666382},{"id":"https://openalex.org/C188084074","wikidata":"https://www.wikidata.org/wiki/Q194294","display_name":"Bioethics","level":2,"score":0.5604687929153442},{"id":"https://openalex.org/C55587333","wikidata":"https://www.wikidata.org/wiki/Q1133029","display_name":"Engineering ethics","level":1,"score":0.5590328574180603},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.5498542189598083},{"id":"https://openalex.org/C145642194","wikidata":"https://www.wikidata.org/wiki/Q870895","display_name":"Health informatics","level":3,"score":0.5348564386367798},{"id":"https://openalex.org/C203663800","wikidata":"https://www.wikidata.org/wiki/Q848979","display_name":"Citizen journalism","level":2,"score":0.5019614696502686},{"id":"https://openalex.org/C106977388","wikidata":"https://www.wikidata.org/wiki/Q2752427","display_name":"Medical research","level":2,"score":0.46433815360069275},{"id":"https://openalex.org/C140988679","wikidata":"https://www.wikidata.org/wiki/Q7140444","display_name":"Participatory action research","level":2,"score":0.4613916873931885},{"id":"https://openalex.org/C94625758","wikidata":"https://www.wikidata.org/wiki/Q7163","display_name":"Politics","level":2,"score":0.45757055282592773},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.4284566640853882},{"id":"https://openalex.org/C39389867","wikidata":"https://www.wikidata.org/wiki/Q380767","display_name":"Corporate governance","level":2,"score":0.4271712899208069},{"id":"https://openalex.org/C75684735","wikidata":"https://www.wikidata.org/wiki/Q858810","display_name":"Big data","level":2,"score":0.42473888397216797},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.39801862835884094},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.33370524644851685},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.29873326420783997},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.1431473195552826},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.12448889017105103},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.08269500732421875},{"id":"https://openalex.org/C111919701","wikidata":"https://www.wikidata.org/wiki/Q9135","display_name":"Operating system","level":1,"score":0.0},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0},{"id":"https://openalex.org/C19165224","wikidata":"https://www.wikidata.org/wiki/Q23404","display_name":"Anthropology","level":1,"score":0.0},{"id":"https://openalex.org/C151730666","wikidata":"https://www.wikidata.org/wiki/Q7205","display_name":"Paleontology","level":1,"score":0.0},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.0},{"id":"https://openalex.org/C10138342","wikidata":"https://www.wikidata.org/wiki/Q43015","display_name":"Finance","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000077558","descriptor_name":"Big Data","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000077558","descriptor_name":"Big Data","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000077558","descriptor_name":"Big Data","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D006113","descriptor_name":"United Kingdom","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006113","descriptor_name":"United Kingdom","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006113","descriptor_name":"United Kingdom","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":"D006801","descriptor_name":"Humans","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":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D026689","descriptor_name":"Ethical Analysis","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D026689","descriptor_name":"Ethical Analysis","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D026689","descriptor_name":"Ethical Analysis","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D033182","descriptor_name":"Intention","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D033182","descriptor_name":"Intention","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D033182","descriptor_name":"Intention","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035502","descriptor_name":"Trust","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035502","descriptor_name":"Trust","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035502","descriptor_name":"Trust","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false}],"locations_count":5,"locations":[{"id":"doi:10.1186/s12911-019-0799-7","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-019-0799-7","pdf_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-019-0799-7","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},{"id":"pmid:31023321","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/31023321","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,"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":"BMC medical informatics and decision making","raw_type":null},{"id":"pmh:oai:doaj.org/article:59a20b58e31c46c8b97da3ef0981fb44","is_oa":true,"landing_page_url":"https://doaj.org/article/59a20b58e31c46c8b97da3ef0981fb44","pdf_url":null,"source":{"id":"https://openalex.org/S112646816","display_name":"SHILAP Revista de lepidopterolog\u00eda","issn_l":"0300-5267","issn":["0300-5267","2340-4078"],"is_oa":true,"is_in_doaj":true,"is_core":false,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by-sa","license_id":"https://openalex.org/licenses/cc-by-sa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"BMC Medical Informatics and Decision Making, Vol 19, Iss 1, Pp 1-10 (2019)","raw_type":"article"},{"id":"pmh:oai:europepmc.org:5477360","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/6482526","pdf_url":null,"source":{"id":"https://openalex.org/S4306400806","display_name":"Europe PMC (PubMed Central)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1303153112","host_organization_name":"European Bioinformatics Institute","host_organization_lineage":["https://openalex.org/I1303153112"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Text"},{"id":"pmh:oai:publications.goettingen-research-online.de:2/59899","is_oa":true,"landing_page_url":"https://resolver.sub.uni-goettingen.de/purl?gs-1/16075","pdf_url":null,"source":{"id":"https://openalex.org/S4306401634","display_name":"GoeScholar  The Publication Server of the Georg-August-Universit\u00e4t G\u00f6ttingen (Georg-August-Universit\u00e4t G\u00f6ttingen)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I4210122495","host_organization_name":"Asklepios Klinik St. Georg","host_organization_lineage":["https://openalex.org/I4210122495"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"published_version"}],"best_oa_location":{"id":"doi:10.1186/s12911-019-0799-7","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-019-0799-7","pdf_url":"https://bmcmedinformdecismak.biomedcentral.com/track/pdf/10.1186/s12911-019-0799-7","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},"sustainable_development_goals":[],"awards":[{"id":"https://openalex.org/G5644826747","display_name":null,"funder_award_id":"01ZZ1802","funder_id":"https://openalex.org/F4320321114","funder_display_name":"Bundesministerium f\u00fcr Bildung und Forschung"},{"id":"https://openalex.org/G8161459476","display_name":null,"funder_award_id":"01ZZ1802B","funder_id":"https://openalex.org/F4320321114","funder_display_name":"Bundesministerium f\u00fcr Bildung und Forschung"}],"funders":[{"id":"https://openalex.org/F4320321114","display_name":"Bundesministerium f\u00fcr Bildung und Forschung","ror":"https://ror.org/04pz7b180"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2947649908.pdf","grobid_xml":"https://content.openalex.org/works/W2947649908.grobid-xml"},"referenced_works_count":61,"referenced_works":["https://openalex.org/W100161477","https://openalex.org/W179368776","https://openalex.org/W1542709524","https://openalex.org/W1555289858","https://openalex.org/W1558256156","https://openalex.org/W1572224924","https://openalex.org/W1767470961","https://openalex.org/W1803229122","https://openalex.org/W1969704932","https://openalex.org/W1980147143","https://openalex.org/W1984044747","https://openalex.org/W1986345020","https://openalex.org/W1999438066","https://openalex.org/W2008251417","https://openalex.org/W2009289055","https://openalex.org/W2017017924","https://openalex.org/W2027139930","https://openalex.org/W2030874357","https://openalex.org/W2038114687","https://openalex.org/W2040189749","https://openalex.org/W2058931942","https://openalex.org/W2060836284","https://openalex.org/W2064842021","https://openalex.org/W2082485061","https://openalex.org/W2100615137","https://openalex.org/W2104904017","https://openalex.org/W2105606670","https://openalex.org/W2119086081","https://openalex.org/W2127491655","https://openalex.org/W2138657002","https://openalex.org/W2147671322","https://openalex.org/W2149069322","https://openalex.org/W2153063818","https://openalex.org/W2156361351","https://openalex.org/W2156895524","https://openalex.org/W2163560143","https://openalex.org/W2224716381","https://openalex.org/W2261525379","https://openalex.org/W2342690669","https://openalex.org/W2412787177","https://openalex.org/W2479446485","https://openalex.org/W2500740994","https://openalex.org/W2548164316","https://openalex.org/W2558367978","https://openalex.org/W2567657395","https://openalex.org/W2580417738","https://openalex.org/W2591382767","https://openalex.org/W2603644021","https://openalex.org/W2617004089","https://openalex.org/W2761123249","https://openalex.org/W2806194886","https://openalex.org/W2898554559","https://openalex.org/W2899086904","https://openalex.org/W2901711877","https://openalex.org/W3014478659","https://openalex.org/W3121418125","https://openalex.org/W3205065638","https://openalex.org/W4239241438","https://openalex.org/W4242338380","https://openalex.org/W4300777287","https://openalex.org/W6721537553"],"related_works":["https://openalex.org/W2888795419","https://openalex.org/W4205965667","https://openalex.org/W2141278068","https://openalex.org/W619121864","https://openalex.org/W2906533866","https://openalex.org/W2278654663","https://openalex.org/W4200420161","https://openalex.org/W4403245454","https://openalex.org/W4200091930","https://openalex.org/W4241050114"],"abstract_inverted_index":{"Based":[0],"on":[1],"the":[2],"conceptual":[3,41],"distinctions":[4],"introduced,":[5],"we":[6,32],"formulate":[7],"basic":[8],"criteria":[9],"for":[10,47],"justified":[11],"appeals":[12],"to":[13,27],"participatory":[14],"approaches":[15],"in":[16,21,25,53],"HBDR":[17,54],"and":[18,23,51,55],"data-intensive":[19],"research":[20],"medicine":[22],"healthcare":[24],"order":[26],"overcome":[28],"these":[29],"shortcomings.":[30],"As":[31],"suggest,":[33],"this":[34],"is":[35],"not":[36],"only":[37],"a":[38,44],"matter":[39],"of":[40],"clarity,":[42],"but":[43],"crucial":[45],"requirement":[46],"maintaining":[48],"ethical":[49],"standards":[50],"trust":[52],"related":[56],"medical":[57],"research.":[58]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2025,"cited_by_count":9},{"year":2024,"cited_by_count":13},{"year":2023,"cited_by_count":5},{"year":2022,"cited_by_count":7},{"year":2021,"cited_by_count":12},{"year":2020,"cited_by_count":8},{"year":2019,"cited_by_count":2}],"updated_date":"2026-04-10T15:06:20.359241","created_date":"2025-10-10T00:00:00"}
