{"id":"https://openalex.org/W340417874","doi":"https://doi.org/10.1136/amiajnl-2013-002370","title":"Clinical research data warehouse governance for distributed research networks in the USA: a systematic review of the literature","display_name":"Clinical research data warehouse governance for distributed research networks in the USA: a systematic review of the literature","publication_year":2014,"publication_date":"2014-03-29","ids":{"openalex":"https://openalex.org/W340417874","doi":"https://doi.org/10.1136/amiajnl-2013-002370","mag":"340417874","pmid":"https://pubmed.ncbi.nlm.nih.gov/24682495"},"language":"en","primary_location":{"id":"doi:10.1136/amiajnl-2013-002370","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2013-002370","pdf_url":"https://academic.oup.com/jamia/article-pdf/21/4/730/5994458/21-4-730.pdf","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":"review","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://academic.oup.com/jamia/article-pdf/21/4/730/5994458/21-4-730.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5032708536","display_name":"John H. Holmes","orcid":"https://orcid.org/0000-0003-2167-3602"},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"J. H. Holmes","raw_affiliation_strings":["Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA","institution_ids":["https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5008255442","display_name":"Thomas E. Elliott","orcid":"https://orcid.org/0000-0002-8570-4933"},"institutions":[{"id":"https://openalex.org/I130238516","display_name":"University of Minnesota","ror":"https://ror.org/017zqws13","country_code":"US","type":"education","lineage":["https://openalex.org/I130238516"]},{"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":"T. E. Elliott","raw_affiliation_strings":["University of Minnesota Medical School, HealthPartners Institute for Education and Research, Duluth, Minnesota, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Minnesota Medical School, HealthPartners Institute for Education and Research, Duluth, Minnesota, USA","institution_ids":["https://openalex.org/I130238516","https://openalex.org/I52792670"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060381803","display_name":"Jeffrey S. Brown","orcid":"https://orcid.org/0000-0002-9340-7189"},"institutions":[{"id":"https://openalex.org/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"J. S. Brown","raw_affiliation_strings":["Harvard Medical School Department of Population Medicine, Boston, Massachusetts, USA","Harvard Medical School Department of Population Medicine Boston Massachusetts USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Harvard Medical School Department of Population Medicine, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I136199984"]},{"raw_affiliation_string":"Harvard Medical School Department of Population Medicine Boston Massachusetts USA","institution_ids":["https://openalex.org/I136199984"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5086515905","display_name":"Marsha A. Raebel","orcid":"https://orcid.org/0000-0002-8485-7161"},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"M. A. Raebel","raw_affiliation_strings":["Kaiser Permanente Colorado Institute for Health Research, Denver, Colorado, USA","Kaiser Permanente Colorado Institute for Health Research Denver Colorado USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Kaiser Permanente Colorado Institute for Health Research, Denver, Colorado, USA","institution_ids":["https://openalex.org/I1343052199"]},{"raw_affiliation_string":"Kaiser Permanente Colorado Institute for Health Research Denver Colorado USA","institution_ids":["https://openalex.org/I1343052199"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5038416985","display_name":"Arthur J. Davidson","orcid":"https://orcid.org/0000-0002-0174-1500"},"institutions":[{"id":"https://openalex.org/I2801983979","display_name":"Denver Health Medical Center","ror":"https://ror.org/01fbz6h17","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2801983979"]},{"id":"https://openalex.org/I4210148334","display_name":"Health and Hospital Corporation","ror":"https://ror.org/03hpmwj60","country_code":"US","type":"government","lineage":["https://openalex.org/I4210148334"]},{"id":"https://openalex.org/I921990950","display_name":"University of Colorado Denver","ror":"https://ror.org/02hh7en24","country_code":"US","type":"education","lineage":["https://openalex.org/I921990950"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"A. Davidson","raw_affiliation_strings":["Denver Health and Hospital Authority, Denver, Colorado, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Denver Health and Hospital Authority, Denver, Colorado, USA","institution_ids":["https://openalex.org/I2801983979","https://openalex.org/I4210148334","https://openalex.org/I921990950"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5013023665","display_name":"Andrew Nelson","orcid":"https://orcid.org/0000-0002-4071-3502"},"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":"A. F. Nelson","raw_affiliation_strings":["HealthPartners Institute for Education and Research, Minneapolis, Minnesota, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"HealthPartners Institute for Education and Research, Minneapolis, Minnesota, USA","institution_ids":["https://openalex.org/I52792670"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5030295784","display_name":"Annie Chung","orcid":"https://orcid.org/0000-0002-3072-7038"},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"A. Chung","raw_affiliation_strings":["Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA","institution_ids":["https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5053323852","display_name":"Pierre-Andre La Chance","orcid":null},"institutions":[{"id":"https://openalex.org/I4210114677","display_name":"Kaiser Permanente Center for Health Research","ror":"https://ror.org/028gzjv13","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343052199","https://openalex.org/I4210114677"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"P. La Chance","raw_affiliation_strings":["Research Informatics, Center for Health Research, Kaiser Permanente, Portland, Oregon, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Research Informatics, Center for Health Research, Kaiser Permanente, Portland, Oregon, USA","institution_ids":["https://openalex.org/I4210114677"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5056204870","display_name":"John F. Steiner","orcid":"https://orcid.org/0000-0002-6514-6057"},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"J. F. Steiner","raw_affiliation_strings":["Kaiser Permanente Colorado, Denver, Colorado, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Kaiser Permanente Colorado, Denver, Colorado, USA","institution_ids":["https://openalex.org/I1343052199"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":9,"corresponding_author_ids":["https://openalex.org/A5032708536"],"corresponding_institution_ids":["https://openalex.org/I79576946"],"apc_list":{"value":3967,"currency":"USD","value_usd":3967},"apc_paid":null,"fwci":0.9036,"has_fulltext":true,"cited_by_count":62,"citation_normalized_percentile":{"value":0.63994911,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":94,"max":99},"biblio":{"volume":"21","issue":"4","first_page":"730","last_page":"736"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.218299999833107,"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":0.218299999833107,"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/T11937","display_name":"Research Data Management Practices","score":0.13729999959468842,"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/T10350","display_name":"Electronic Health Records Systems","score":0.13099999725818634,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/cinahl","display_name":"CINAHL","score":0.7524378895759583},{"id":"https://openalex.org/keywords/publication","display_name":"Publication","score":0.659052312374115},{"id":"https://openalex.org/keywords/corporate-governance","display_name":"Corporate governance","score":0.6399373412132263},{"id":"https://openalex.org/keywords/relevance","display_name":"Relevance (law)","score":0.5875516533851624},{"id":"https://openalex.org/keywords/systematic-review","display_name":"Systematic review","score":0.587079644203186},{"id":"https://openalex.org/keywords/peer-review","display_name":"Peer review","score":0.5368983745574951},{"id":"https://openalex.org/keywords/medline","display_name":"MEDLINE","score":0.5099426507949829},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.4582613408565521},{"id":"https://openalex.org/keywords/grey-literature","display_name":"Grey literature","score":0.44255509972572327},{"id":"https://openalex.org/keywords/dissemination","display_name":"Dissemination","score":0.4285482168197632},{"id":"https://openalex.org/keywords/bibliometrics","display_name":"Bibliometrics","score":0.42444297671318054},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.37243056297302246},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.35886067152023315},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.29044678807258606},{"id":"https://openalex.org/keywords/business","display_name":"Business","score":0.2829662561416626},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.2563168406486511}],"concepts":[{"id":"https://openalex.org/C2781145037","wikidata":"https://www.wikidata.org/wiki/Q5011772","display_name":"CINAHL","level":3,"score":0.7524378895759583},{"id":"https://openalex.org/C41458344","wikidata":"https://www.wikidata.org/wiki/Q732577","display_name":"Publication","level":2,"score":0.659052312374115},{"id":"https://openalex.org/C39389867","wikidata":"https://www.wikidata.org/wiki/Q380767","display_name":"Corporate governance","level":2,"score":0.6399373412132263},{"id":"https://openalex.org/C158154518","wikidata":"https://www.wikidata.org/wiki/Q7310970","display_name":"Relevance (law)","level":2,"score":0.5875516533851624},{"id":"https://openalex.org/C189708586","wikidata":"https://www.wikidata.org/wiki/Q1504425","display_name":"Systematic review","level":3,"score":0.587079644203186},{"id":"https://openalex.org/C138368954","wikidata":"https://www.wikidata.org/wiki/Q215028","display_name":"Peer review","level":2,"score":0.5368983745574951},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.5099426507949829},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.4582613408565521},{"id":"https://openalex.org/C61904560","wikidata":"https://www.wikidata.org/wiki/Q1148359","display_name":"Grey literature","level":3,"score":0.44255509972572327},{"id":"https://openalex.org/C101780184","wikidata":"https://www.wikidata.org/wiki/Q840576","display_name":"Dissemination","level":2,"score":0.4285482168197632},{"id":"https://openalex.org/C178315738","wikidata":"https://www.wikidata.org/wiki/Q603441","display_name":"Bibliometrics","level":2,"score":0.42444297671318054},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.37243056297302246},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.35886067152023315},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.29044678807258606},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.2829662561416626},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.2563168406486511},{"id":"https://openalex.org/C10138342","wikidata":"https://www.wikidata.org/wiki/Q43015","display_name":"Finance","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/C76155785","wikidata":"https://www.wikidata.org/wiki/Q418","display_name":"Telecommunications","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D003195","descriptor_name":"Computer Communication Networks","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D003195","descriptor_name":"Computer Communication Networks","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D003195","descriptor_name":"Computer Communication Networks","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D003195","descriptor_name":"Computer Communication Networks","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","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":"D016494","descriptor_name":"Computer Security","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016494","descriptor_name":"Computer Security","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016494","descriptor_name":"Computer Security","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016494","descriptor_name":"Computer Security","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018907","descriptor_name":"Privacy","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018907","descriptor_name":"Privacy","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018907","descriptor_name":"Privacy","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018907","descriptor_name":"Privacy","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D019992","descriptor_name":"Databases as Topic","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D019992","descriptor_name":"Databases as Topic","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D019992","descriptor_name":"Databases as Topic","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D019992","descriptor_name":"Databases as Topic","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false}],"locations_count":3,"locations":[{"id":"doi:10.1136/amiajnl-2013-002370","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2013-002370","pdf_url":"https://academic.oup.com/jamia/article-pdf/21/4/730/5994458/21-4-730.pdf","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:24682495","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/24682495","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:4078282","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/4078282","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":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"J Am Med Inform Assoc","raw_type":"Text"}],"best_oa_location":{"id":"doi:10.1136/amiajnl-2013-002370","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2013-002370","pdf_url":"https://academic.oup.com/jamia/article-pdf/21/4/730/5994458/21-4-730.pdf","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"},"sustainable_development_goals":[{"score":0.5,"display_name":"Partnerships for the goals","id":"https://metadata.un.org/sdg/17"}],"awards":[{"id":"https://openalex.org/G8089826694","display_name":"SCALABLE PARTNERING NETWORK FOR CER: ACROSS LIFESPAN  CONDITIONS  AND SETTINGS","funder_award_id":"R01HS019912","funder_id":"https://openalex.org/F4320332177","funder_display_name":"Agency for Healthcare Research and Quality"}],"funders":[{"id":"https://openalex.org/F4320332177","display_name":"Agency for Healthcare Research and Quality","ror":"https://ror.org/03jmfdf59"},{"id":"https://openalex.org/F4320338335","display_name":"H2020 European Research Council","ror":"https://ror.org/0472cxd90"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W340417874.pdf","grobid_xml":"https://content.openalex.org/works/W340417874.grobid-xml"},"referenced_works_count":44,"referenced_works":["https://openalex.org/W21355105","https://openalex.org/W64762473","https://openalex.org/W214194437","https://openalex.org/W1484976590","https://openalex.org/W1501241011","https://openalex.org/W1526960672","https://openalex.org/W1574374328","https://openalex.org/W1593219428","https://openalex.org/W1963672880","https://openalex.org/W1977764811","https://openalex.org/W1979523409","https://openalex.org/W1986087095","https://openalex.org/W1994385579","https://openalex.org/W1996356855","https://openalex.org/W2013238169","https://openalex.org/W2030298340","https://openalex.org/W2038351385","https://openalex.org/W2050867888","https://openalex.org/W2051642064","https://openalex.org/W2054918157","https://openalex.org/W2057608272","https://openalex.org/W2060105212","https://openalex.org/W2080449259","https://openalex.org/W2083990413","https://openalex.org/W2090465492","https://openalex.org/W2100837203","https://openalex.org/W2101990766","https://openalex.org/W2111207992","https://openalex.org/W2120989936","https://openalex.org/W2121338342","https://openalex.org/W2127657997","https://openalex.org/W2130219862","https://openalex.org/W2132575578","https://openalex.org/W2139414107","https://openalex.org/W2147923107","https://openalex.org/W2150691335","https://openalex.org/W2152449788","https://openalex.org/W2157440718","https://openalex.org/W2169045816","https://openalex.org/W2183340796","https://openalex.org/W2313274475","https://openalex.org/W2337362200","https://openalex.org/W2476492057","https://openalex.org/W4239040096"],"related_works":["https://openalex.org/W2152890669","https://openalex.org/W2374084962","https://openalex.org/W2016086857","https://openalex.org/W2131881665","https://openalex.org/W4248517311","https://openalex.org/W2978405156","https://openalex.org/W1976738710","https://openalex.org/W1574371370","https://openalex.org/W3111427041","https://openalex.org/W3141519074"],"abstract_inverted_index":{"OBJECTIVE:":[0],"To":[1],"review":[2],"the":[3,47,80],"published,":[4],"peer-reviewed":[5,84,176],"literature":[6,85],"on":[7,86,98],"clinical":[8],"research":[9,15,100,143],"data":[10,87,151,183],"warehouse":[11,88,184],"governance":[12,89,102,152,169,185],"in":[13,46,79],"distributed":[14],"networks":[16],"(DRNs).":[17],"MATERIALS":[18],"AND":[19],"METHODS:":[20],"Medline,":[21],"PubMed,":[22],"EMBASE,":[23],"CINAHL,":[24],"and":[25,74,144,154,175,191],"INSPEC":[26],"were":[27,49,52,68,77,103,116],"searched":[28],"for":[29,72,109,142],"relevant":[30],"documents":[31,42,67,120],"published":[32],"through":[33],"July":[34],"31,":[35],"2013":[36],"using":[37,54],"a":[38,55],"systematic":[39],"approach.":[40],"Only":[41],"relating":[43],"to":[44,62,161,195],"DRNs":[45,137],"USA":[48],"included.":[50],"Documents":[51],"analyzed":[53],"classification":[56,114],"framework":[57],"consisting":[58],"of":[59,149],"10":[60,113],"facets":[61,115],"identify":[63],"themes.":[64],"RESULTS:":[65],"6641":[66],"retrieved.":[69],"After":[70],"screening":[71],"duplicates":[73],"relevance,":[75],"38":[76],"included":[78],"final":[81],"review.":[82],"A":[83],"is":[90,93,156,159],"emerging,":[91],"but":[92],"still":[94],"sparse.":[95],"Peer-reviewed":[96],"publications":[97,186],"UK":[99],"network":[101],"more":[104,125,164],"prevalent,":[105],"although":[106],"not":[107],"reviewed":[108],"this":[110],"analysis.":[111],"All":[112],"used,":[117],"with":[118,132],"some":[119],"falling":[121],"into":[122],"two":[123],"or":[124],"classifications.":[126],"No":[127],"document":[128],"addressed":[129],"costs":[130],"associated":[131],"governance.":[133],"DISCUSSION:":[134],"Even":[135],"though":[136],"are":[138,193],"emerging":[139],"as":[140,163,171],"vehicles":[141],"public":[145],"health":[146],"surveillance,":[147],"understanding":[148],"DRN":[150,165,182,189],"policies":[153],"procedures":[155],"limited.":[157],"This":[158],"expected":[160],"change":[162],"projects":[166],"disseminate":[167],"their":[168],"approaches":[170],"publicly":[172],"available":[173],"toolkits":[174],"publications.":[177],"CONCLUSIONS:":[178],"While":[179],"peer-reviewed,":[180],"US-based":[181],"have":[187],"increased,":[188],"developers":[190],"administrators":[192],"encouraged":[194],"publish":[196],"information":[197],"about":[198],"these":[199],"programs.":[200]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2025,"cited_by_count":6},{"year":2024,"cited_by_count":2},{"year":2023,"cited_by_count":10},{"year":2022,"cited_by_count":6},{"year":2021,"cited_by_count":5},{"year":2020,"cited_by_count":6},{"year":2019,"cited_by_count":7},{"year":2018,"cited_by_count":3},{"year":2017,"cited_by_count":4},{"year":2016,"cited_by_count":3},{"year":2015,"cited_by_count":6},{"year":2014,"cited_by_count":2}],"updated_date":"2026-08-01T09:00:35.917206","created_date":"2025-10-10T00:00:00"}
