{"id":"https://openalex.org/W4225000465","doi":"https://doi.org/10.1093/jamia/ocac055","title":"Demographic differences in willingness to share electronic health records in the All of Us Research Program","display_name":"Demographic differences in willingness to share electronic health records in the All of Us Research Program","publication_year":2022,"publication_date":"2022-04-14","ids":{"openalex":"https://openalex.org/W4225000465","doi":"https://doi.org/10.1093/jamia/ocac055","pmid":"https://pubmed.ncbi.nlm.nih.gov/35472083"},"language":"en","primary_location":{"id":"doi:10.1093/jamia/ocac055","is_oa":false,"landing_page_url":"https://doi.org/10.1093/jamia/ocac055","pdf_url":null,"source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/9196689","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5045176310","display_name":"Christine L.M. Joseph","orcid":"https://orcid.org/0000-0003-0069-4391"},"institutions":[{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health System","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Christine L M Joseph","raw_affiliation_strings":["Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA","institution_ids":["https://openalex.org/I154057602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012087578","display_name":"Amy Tang","orcid":"https://orcid.org/0000-0002-5772-2878"},"institutions":[{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health System","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Amy Tang","raw_affiliation_strings":["Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA","institution_ids":["https://openalex.org/I154057602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5023541927","display_name":"David Chesla","orcid":null},"institutions":[{"id":"https://openalex.org/I146183641","display_name":"Spectrum Health","ror":"https://ror.org/02ahxdd04","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I146183641"]},{"id":"https://openalex.org/I4210096007","display_name":"Corewell Health Blodgett Hospital","ror":"https://ror.org/00qy68j92","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210096007","https://openalex.org/I4392738273"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"David W Chesla","raw_affiliation_strings":["Spectrum Health, Research and Development, Grand Rapids, Michigan, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Spectrum Health, Research and Development, Grand Rapids, Michigan, USA","institution_ids":["https://openalex.org/I4210096007","https://openalex.org/I146183641"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5050873587","display_name":"Mara M. Epstein","orcid":"https://orcid.org/0000-0001-7906-4856"},"institutions":[{"id":"https://openalex.org/I166722992","display_name":"University of Massachusetts Chan Medical School","ror":"https://ror.org/0464eyp60","country_code":"US","type":"education","lineage":["https://openalex.org/I166722992"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Mara M Epstein","raw_affiliation_strings":["Department of Medicine, University of Massachusetts Medical School , Worcester, Massachusetts, USA","The Meyers Primary Care Institute , Worcester, Massachusetts, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Medicine, University of Massachusetts Medical School , Worcester, Massachusetts, USA","institution_ids":["https://openalex.org/I166722992"]},{"raw_affiliation_string":"The Meyers Primary Care Institute , Worcester, Massachusetts, USA","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5062043780","display_name":"Pamala A. Pawloski","orcid":"https://orcid.org/0000-0002-1005-5764"},"institutions":[{"id":"https://openalex.org/I52792670","display_name":"HealthPartners","ror":"https://ror.org/03s9ada67","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I52792670"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Pamala A Pawloski","raw_affiliation_strings":["Health Partners Institute , Bloomington, Minnesota, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Health Partners Institute , Bloomington, Minnesota, USA","institution_ids":["https://openalex.org/I52792670"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5048153921","display_name":"Alan Stevens","orcid":"https://orcid.org/0000-0003-2247-1228"},"institutions":[{"id":"https://openalex.org/I4210102330","display_name":"Baylor Scott & White Medical Center - Temple","ror":"https://ror.org/017cm6884","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210102330","https://openalex.org/I4210160418"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Alan B Stevens","raw_affiliation_strings":["Baylor Scott and White Medical Center Temple, Center for Applied Health Research , Temple, Texas, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Baylor Scott and White Medical Center Temple, Center for Applied Health Research , Temple, Texas, USA","institution_ids":["https://openalex.org/I4210102330"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5042050608","display_name":"Stephen C. Waring","orcid":"https://orcid.org/0000-0002-9674-0083"},"institutions":[{"id":"https://openalex.org/I143414431","display_name":"Essentia Health","ror":"https://ror.org/019ssje31","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I143414431"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Stephen C Waring","raw_affiliation_strings":["Essentia Institute for Rural Health, Division of Research , Duluth, Minnesota, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Essentia Institute for Rural Health, Division of Research , Duluth, Minnesota, USA","institution_ids":["https://openalex.org/I143414431"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5085994871","display_name":"Brian K. Ahmedani","orcid":"https://orcid.org/0000-0003-4291-4516"},"institutions":[{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health System","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Brian K Ahmedani","raw_affiliation_strings":["Henry Ford Health System, Center for Health Policy and Health Services Research , Detroit, Michigan, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Henry Ford Health System, Center for Health Policy and Health Services Research , Detroit, Michigan, USA","institution_ids":["https://openalex.org/I154057602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5064873446","display_name":"Christine Cole Johnson","orcid":"https://orcid.org/0000-0002-6864-6604"},"institutions":[{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health System","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Christine C Johnson","raw_affiliation_strings":["Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA","institution_ids":["https://openalex.org/I154057602"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5012814972","display_name":"Cathryn Peltz-Rauchman","orcid":null},"institutions":[{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health System","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Cathryn D Peltz-Rauchman","raw_affiliation_strings":["Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Henry Ford Health System, Public Health Sciences , Detroit, Michigan, USA","institution_ids":["https://openalex.org/I154057602"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":10,"corresponding_author_ids":["https://openalex.org/A5012814972"],"corresponding_institution_ids":["https://openalex.org/I154057602"],"apc_list":{"value":3967,"currency":"USD","value_usd":3967},"apc_paid":null,"fwci":2.0579,"has_fulltext":false,"cited_by_count":9,"citation_normalized_percentile":{"value":0.8960462,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":98},"biblio":{"volume":"29","issue":"7","first_page":"1271","last_page":"1278"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10350","display_name":"Electronic Health Records Systems","score":0.5619999766349792,"subfield":{"id":"https://openalex.org/subfields/3605","display_name":"Health Information Management"},"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/T10350","display_name":"Electronic Health Records Systems","score":0.5619999766349792,"subfield":{"id":"https://openalex.org/subfields/3605","display_name":"Health Information Management"},"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/T10582","display_name":"Ethics in Clinical Research","score":0.24199999868869781,"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/T10769","display_name":"BRCA gene mutations in cancer","score":0.032499998807907104,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/ethnic-group","display_name":"Ethnic group","score":0.649526059627533},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.531084418296814},{"id":"https://openalex.org/keywords/confidence-interval","display_name":"Confidence interval","score":0.5233449339866638},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.5147088170051575},{"id":"https://openalex.org/keywords/odds-ratio","display_name":"Odds ratio","score":0.4984626770019531},{"id":"https://openalex.org/keywords/health-equity","display_name":"Health equity","score":0.4855339527130127},{"id":"https://openalex.org/keywords/gerontology","display_name":"Gerontology","score":0.476443350315094},{"id":"https://openalex.org/keywords/diversity","display_name":"Diversity (politics)","score":0.46793171763420105},{"id":"https://openalex.org/keywords/demography","display_name":"Demography","score":0.4659508168697357},{"id":"https://openalex.org/keywords/odds","display_name":"Odds","score":0.432947039604187},{"id":"https://openalex.org/keywords/electronic-health-record","display_name":"Electronic health record","score":0.4246794581413269},{"id":"https://openalex.org/keywords/family-medicine","display_name":"Family medicine","score":0.41669487953186035},{"id":"https://openalex.org/keywords/data-collection","display_name":"Data collection","score":0.4110979437828064},{"id":"https://openalex.org/keywords/logistic-regression","display_name":"Logistic regression","score":0.35129261016845703},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.1588939130306244},{"id":"https://openalex.org/keywords/public-health","display_name":"Public health","score":0.1406116783618927},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.12850525975227356},{"id":"https://openalex.org/keywords/sociology","display_name":"Sociology","score":0.09103286266326904}],"concepts":[{"id":"https://openalex.org/C137403100","wikidata":"https://www.wikidata.org/wiki/Q41710","display_name":"Ethnic group","level":2,"score":0.649526059627533},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.531084418296814},{"id":"https://openalex.org/C44249647","wikidata":"https://www.wikidata.org/wiki/Q208498","display_name":"Confidence interval","level":2,"score":0.5233449339866638},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.5147088170051575},{"id":"https://openalex.org/C156957248","wikidata":"https://www.wikidata.org/wiki/Q1862216","display_name":"Odds ratio","level":2,"score":0.4984626770019531},{"id":"https://openalex.org/C2250968","wikidata":"https://www.wikidata.org/wiki/Q1512929","display_name":"Health equity","level":3,"score":0.4855339527130127},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.476443350315094},{"id":"https://openalex.org/C2781316041","wikidata":"https://www.wikidata.org/wiki/Q1230584","display_name":"Diversity (politics)","level":2,"score":0.46793171763420105},{"id":"https://openalex.org/C149923435","wikidata":"https://www.wikidata.org/wiki/Q37732","display_name":"Demography","level":1,"score":0.4659508168697357},{"id":"https://openalex.org/C143095724","wikidata":"https://www.wikidata.org/wiki/Q515895","display_name":"Odds","level":3,"score":0.432947039604187},{"id":"https://openalex.org/C3020144179","wikidata":"https://www.wikidata.org/wiki/Q10871684","display_name":"Electronic health record","level":3,"score":0.4246794581413269},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.41669487953186035},{"id":"https://openalex.org/C133462117","wikidata":"https://www.wikidata.org/wiki/Q4929239","display_name":"Data collection","level":2,"score":0.4110979437828064},{"id":"https://openalex.org/C151956035","wikidata":"https://www.wikidata.org/wiki/Q1132755","display_name":"Logistic regression","level":2,"score":0.35129261016845703},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.1588939130306244},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.1406116783618927},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.12850525975227356},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.09103286266326904},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"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/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000075485","descriptor_name":"Population Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000075485","descriptor_name":"Population Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000075485","descriptor_name":"Population Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000075485","descriptor_name":"Population Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000075485","descriptor_name":"Population Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000075485","descriptor_name":"Population Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D005006","descriptor_name":"Ethnicity","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005006","descriptor_name":"Ethnicity","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005006","descriptor_name":"Ethnicity","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005006","descriptor_name":"Ethnicity","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005006","descriptor_name":"Ethnicity","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005006","descriptor_name":"Ethnicity","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006630","descriptor_name":"Hispanic or Latino","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006630","descriptor_name":"Hispanic or Latino","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006630","descriptor_name":"Hispanic or Latino","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006630","descriptor_name":"Hispanic or Latino","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006630","descriptor_name":"Hispanic or Latino","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006630","descriptor_name":"Hispanic or Latino","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":"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":"D008297","descriptor_name":"Male","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":"D008297","descriptor_name":"Male","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":"D008297","descriptor_name":"Male","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":"D008875","descriptor_name":"Middle Aged","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":"D008875","descriptor_name":"Middle Aged","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":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D044469","descriptor_name":"Racial Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D044469","descriptor_name":"Racial Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D044469","descriptor_name":"Racial Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D044469","descriptor_name":"Racial Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D044469","descriptor_name":"Racial Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D044469","descriptor_name":"Racial Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.1093/jamia/ocac055","is_oa":false,"landing_page_url":"https://doi.org/10.1093/jamia/ocac055","pdf_url":null,"source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},{"id":"pmid:35472083","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/35472083","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":"Journal of the American Medical Informatics Association : JAMIA","raw_type":null},{"id":"pmh:oai:pubmedcentral.nih.gov:9196689","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/9196689","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"J Am Med Inform Assoc","raw_type":"Text"}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:9196689","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/9196689","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"J Am Med Inform Assoc","raw_type":"Text"},"sustainable_development_goals":[],"awards":[{"id":"https://openalex.org/G5366825214","display_name":null,"funder_award_id":"OT2 OD026550","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":20,"referenced_works":["https://openalex.org/W107884914","https://openalex.org/W1505339426","https://openalex.org/W1555222532","https://openalex.org/W2034067748","https://openalex.org/W2082859644","https://openalex.org/W2083608806","https://openalex.org/W2120673540","https://openalex.org/W2170734833","https://openalex.org/W2176268810","https://openalex.org/W2295344864","https://openalex.org/W2416359980","https://openalex.org/W2604782718","https://openalex.org/W2604967160","https://openalex.org/W2784533245","https://openalex.org/W2789773322","https://openalex.org/W2934266997","https://openalex.org/W2969961810","https://openalex.org/W6604333950","https://openalex.org/W6630359682","https://openalex.org/W6633362636"],"related_works":["https://openalex.org/W1604849300","https://openalex.org/W4231328776","https://openalex.org/W2766061861","https://openalex.org/W1604293003","https://openalex.org/W1979850356","https://openalex.org/W3005040438","https://openalex.org/W3132387835","https://openalex.org/W2910024633","https://openalex.org/W3124750890","https://openalex.org/W3186119517"],"abstract_inverted_index":{"OBJECTIVE:":[0],"Participant":[1],"willingness":[2],"to":[3,12,36,126,129,139,154,203,206,221,224,227,242],"share":[4,127,155,204],"electronic":[5],"health":[6,74],"record":[7],"(EHR)":[8],"information":[9],"is":[10,70,240],"central":[11],"success":[13],"of":[14,18,21,31,73,94,123,193,236,252],"the":[15,28,58,62,234,237,246,249],"National":[16],"Institutes":[17],"Health":[19,63],"All":[20],"Us":[22],"Research":[23,66],"Program":[24],"(AoURP).":[25],"We":[26,43,86],"describe":[27],"demographic":[29],"characteristics":[30],"participants":[32,45,92,124],"who":[33],"decline":[34,153,225],"access":[35,128,205,226],"their":[37,130,207,228],"EHR":[38,131,156,208,229],"data.":[39,209],"MATERIALS":[40],"AND":[41],"METHODS:":[42],"included":[44],"enrolling":[46],"in":[47,190,197],"AoURP":[48,82,182,238],"between":[49],"June":[50],"6,":[51],"2017":[52],"and":[53,80,114,145,168,215],"December":[54],"31,":[55],"2019":[56],"through":[57],"Trans-American":[59],"Consortium":[60],"for":[61,89],"Care":[64],"Systems":[65],"Network":[67],"(TACH).":[68],"TACH":[69,135],"a":[71,184],"consortium":[72],"care":[75],"systems":[76],"spanning":[77],"6":[78],"states,":[79],"an":[81],"research":[83,199],"partner.":[84],"RESULTS:":[85],"analyzed":[87],"data":[88,132],"25":[90],"852":[91],"(89.3%":[93],"those":[95],"enrolled).":[96],"Mean":[97],"age":[98],"=":[99,137,163],"52.0":[100],"years":[101],"(SD":[102],"16.8),":[103],"with":[104,116,152],"66.5%":[105],"White,":[106],"18.7%":[107],"Black/African":[108],"American,":[109],"7.7%":[110],"Hispanic,":[111],"32.5%":[112],"female,":[113],"76%":[115],">a":[117],"high":[118],"school":[119,148],"diploma.":[120],"Overall,":[121],"2.3%":[122],"declined":[125],"(range":[133],"across":[134],"sites":[136],"1.3%":[138],"3.5%).":[140],"Younger":[141],"age,":[142],"female":[143],"sex,":[144],"education":[146],">high":[147],"were":[149,173,179,217],"significantly":[150],"associated":[151],"data,":[157,213],"odds":[158],"ratio":[159],"(95%":[160],"confidence":[161],"interval)":[162],"1.26":[164],"(1.19-1.33),":[165],"1.74":[166],"(1.42-2.14),":[167],"2.44":[169],"(1.86-3.21),":[170],"respectively.":[171],"Results":[172,231],"similar":[174],"when":[175],"several":[176],"sensitivity":[177],"analyses":[178],"performed.":[180],"DISCUSSION:":[181],"seeks":[183],"dataset":[185,239],"reflecting":[186],"our":[187,212],"nation's":[188],"diversity":[189],"all":[191],"aspects":[192],"participation.":[194],"Those":[195],"under-represented":[196],"biomedical":[198],"may":[200],"be":[201,243],"reluctant":[202],"CONCLUSION:":[210],"In":[211],"race":[214],"ethnicity":[216],"not":[218],"independently":[219],"related":[220],"participant":[222],"decision":[223],"information.":[230],"suggest":[232],"that":[233],"value":[235],"unlikely":[241],"constrained":[244],"by":[245],"size":[247],"or":[248],"racial/ethnic":[250],"composition":[251],"this":[253],"subgroup.":[254]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2025,"cited_by_count":2},{"year":2024,"cited_by_count":4},{"year":2023,"cited_by_count":1},{"year":2022,"cited_by_count":1}],"updated_date":"2026-06-24T13:16:06.693445","created_date":"2025-10-10T00:00:00"}