{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T01:07:20Z","timestamp":1789002440228,"version":"build-2803163510"},"reference-count":51,"publisher":"Public Library of Science (PLoS)","issue":"8","license":[{"start":{"date-parts":[[2023,8,31]],"date-time":"2023-08-31T00:00:00Z","timestamp":1693440000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004726","name":"Ministry of Health, British Columbia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100004726","id-type":"DOI","asserted-by":"publisher"}]},{"name":"BC Centre for Excellence in HIV\/AIDS"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"\nIntroduction<\/jats:title>\nCase-finding algorithms can be applied to administrative healthcare records to identify people with diseases, including people with HIV (PWH). When supplementing an existing registry of a low prevalence disease, near-perfect specificity helps minimize impacts of adding in algorithm-identified false positive cases. We evaluated the performance of algorithms applied to healthcare records to supplement an HIV registry in British Columbia (BC), Canada.<\/jats:p>\n<\/jats:sec>\n\nMethods<\/jats:title>\nWe applied algorithms based on HIV-related diagnostic codes to healthcare practitioner and hospitalization records. We evaluated 28 algorithms in a validation sub-sample of 7,124 persons with positive HIV tests (2,817 with a prior negative test) from the STOP HIV\/AIDS data linkage\u2013a linkage of healthcare, clinical, and HIV test records for PWH in BC, resembling a disease registry (1996\u20132020). Algorithms were primarily assessed based on their specificity\u2013derived from this validation sub-sample\u2013and their impact on the estimate of the total number of PWH in BC as of 2020.<\/jats:p>\n<\/jats:sec>\n\nResults<\/jats:title>\nIn the validation sub-sample, median age at positive HIV test was 37 years (Q1: 30, Q3: 46), 80.1% were men, and 48.9% resided in the Vancouver Coastal Health Authority. For all algorithms, specificity exceeded 97% and sensitivity ranged from 81% to 95%. To supplement the HIV registry, we selected an algorithm with 99.89% (95% CI: 99.76% - 100.00%) specificity and 82.21% (95% CI: 81.26% - 83.16%) sensitivity, requiring five HIV-related healthcare practitioner encounters or two HIV-related hospitalizations within a 12-month window, or one hospitalization with HIV as the most responsible diagnosis. Upon adding PWH identified by this highly-specific algorithm to the registry, 8,774 PWH were present in BC as of March 2020, of whom 333 (3.8%) were algorithm-identified.<\/jats:p>\n<\/jats:sec>\n\nDiscussion<\/jats:title>\nIn the context of an existing low prevalence disease registry, the results of our validation study demonstrate the value of highly-specific case-finding algorithms applied to administrative healthcare records to enhance our ability to estimate the number of PWH living in BC.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0290777","type":"journal-article","created":{"date-parts":[[2023,8,31]],"date-time":"2023-08-31T17:35:35Z","timestamp":1693503335000},"page":"e0290777","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":10,"title":["Identification of people with low prevalence diseases in administrative healthcare records: A case study of HIV in British Columbia, Canada"],"prefix":"10.1371","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8055-3542","authenticated-orcid":true,"given":"Scott D.","family":"Emerson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7425-2719","authenticated-orcid":true,"given":"Taylor","family":"McLinden","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6411-8089","authenticated-orcid":true,"given":"Paul","family":"Sereda","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Viviane D.","family":"Lima","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert S.","family":"Hogg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9530-5728","authenticated-orcid":true,"given":"Katherine W.","family":"Kooij","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda M.","family":"Yonkman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate A.","family":"Salters","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Moore","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Junine","family":"Toy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason","family":"Wong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Theodora","family":"Consolacion","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julio S. G.","family":"Montaner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rolando","family":"Barrios","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2023,8,31]]},"reference":[{"key":"pone.0290777.ref001","doi-asserted-by":"crossref","first-page":"91","DOI":"10.1146\/annurev-publhealth-031210-100700","article-title":"Administrative record linkage as a tool for public health research.","volume":"32","author":"DP Jutte","year":"2011","journal-title":"Annu Rev Public Health"},{"key":"pone.0290777.ref002","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1146\/annurev.publhealth.22.1.213","article-title":"Administrative data for public health surveillance and planning.","volume":"22","author":"BA Virnig","year":"2001","journal-title":"Annu Rev Public Health"},{"key":"pone.0290777.ref003","doi-asserted-by":"crossref","first-page":"821","DOI":"10.1016\/j.jclinepi.2010.10.006","article-title":"Development and use of reporting guidelines for assessing the quality of validation studies of health administrative data","volume":"64","author":"EI Benchimol","year":"2011","journal-title":"J Clin Epidemiol"},{"key":"pone.0290777.ref004","doi-asserted-by":"crossref","first-page":"c4226","DOI":"10.1136\/bmj.c4226","article-title":"Importance of accurately identifying disease in studies using electronic health records","volume":"341","author":"DG Manuel","year":"2010","journal-title":"BMJ"},{"key":"pone.0290777.ref005","doi-asserted-by":"crossref","first-page":"e21748","DOI":"10.1371\/journal.pone.0021748","article-title":"Validation of case-finding algorithms derived from administrative data for identifying adults living with human immunodeficiency virus infection.","volume":"6","author":"T Antoniou","year":"2011","journal-title":"PloS One."},{"key":"pone.0290777.ref006","doi-asserted-by":"crossref","first-page":"c4226","DOI":"10.1136\/bmj.c4226","article-title":"Importance of accurately identifying disease in studies using electronic health records","volume":"341","author":"DG Manuel","year":"2010","journal-title":"BMJ"},{"key":"pone.0290777.ref007","doi-asserted-by":"crossref","first-page":"711","DOI":"10.1155\/2012\/278495","article-title":"Development and validation of an administrative case definition for inflammatory bowel diseases","volume":"26","author":"A Rezaie","year":"2012","journal-title":"Can J Gastroenterol J Can Gastroenterol"},{"key":"pone.0290777.ref008","doi-asserted-by":"crossref","first-page":"1575","DOI":"10.1007\/s00296-017-3734-1","article-title":"Validation of administrative case ascertainment algorithms for chronic childhood arthritis in Manitoba, Canada.","volume":"37","author":"NJ Shiff","year":"2017","journal-title":"Rheumatol Int"},{"key":"pone.0290777.ref009","doi-asserted-by":"crossref","first-page":"224","DOI":"10.1016\/j.jpeds.2017.05.037","article-title":"A Computable Phenotype Improves Cohort Ascertainment in a Pediatric Pulmonary Hypertension Registry","volume":"188","author":"A Geva","year":"2017","journal-title":"J Pediatr"},{"key":"pone.0290777.ref010","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1198\/sbr.2009.0002","article-title":"Methods for Assessing Improvement in Specificity when a Biomarker is Combined with a Standard Screening Test.","volume":"1","author":"PA Shaw","year":"2009","journal-title":"Stat Biopharm Res."},{"key":"pone.0290777.ref011","doi-asserted-by":"crossref","first-page":"185","DOI":"10.1007\/s40290-020-00332-1","article-title":"Establishing Patient Registries for Rare Diseases: Rationale and Challenges.","volume":"34","author":"V Boulanger","year":"2020","journal-title":"Pharm Med."},{"key":"pone.0290777.ref012","article-title":"Summary: Estimates of HIV incidence, prevalence and Canada\u2019s progress on meeting the 90-90-90 HIV targets, 2020.","author":"Public Health Agency of Canada","year":"2022","journal-title":"Surveill Epidemiol Div Prof Guidel Public Health Pract Div Cent Commun Dis Infect Control Public Health Agency Can."},{"key":"pone.0290777.ref013","author":"BC Centre for Excellence in HIV\/AIDS","year":"2020","journal-title":"HIV Monitoring Quarterly Report For British Columbia, Fourth Quarter 2020."},{"key":"pone.0290777.ref014","article-title":"Drug Treatment and Laboratory Database.","author":"BC Centre for Excellence in HIV\/AIDS [creator].","year":"2020","journal-title":"BC Centre for Excellence in HIV\/AIDS (BCCfE) [publisher].;"},{"key":"pone.0290777.ref015","author":"BC Centre for Excellence in HIV\/AIDS","year":"2020","journal-title":"Drug Treatment Program"},{"key":"pone.0290777.ref016","article-title":"Provincial HIV\/AIDS surveillance database.","author":"BC Centre for Disease Control [creator]","year":"2020","journal-title":"BC Centre for Disease Control (BCCDC) [publisher]. Data extract."},{"key":"pone.0290777.ref017","article-title":"Vital Statistics\u2014Deaths.","author":"BC Vital Statistics Agency [creator].","year":"2020","journal-title":"BC Ministry of Health [publisher]. Data extract"},{"key":"pone.0290777.ref018","doi-asserted-by":"crossref","first-page":"1073","DOI":"10.1093\/ije\/dyu070","article-title":"Cohort Profile: Seek and Treat for the Optimal Prevention of HIV\/AIDS in British Columbia (STOP HIV\/AIDS BC).","volume":"43","author":"K Heath","year":"2014","journal-title":"Int J Epidemiol."},{"key":"pone.0290777.ref019","author":"Government of Canada","year":"2017","journal-title":"Public Service Health Care Plan"},{"key":"pone.0290777.ref020","author":"Government of Canada","year":"2021","journal-title":"Indigenous health care in Canada"},{"key":"pone.0290777.ref021","unstructured":"First Nations Health Authority. PharmaCare Transition. [cited 12 Jul 2023]. Available: https:\/\/www.fnha.ca:443\/BenefitsSite\/PharmacareTransitionSite"},{"key":"pone.0290777.ref022","first-page":"48","article-title":"Development of an HIV research database using Medicaid claims data","volume":"16","author":"JM Mrus","year":"2001","journal-title":"AIDS Public Policy J"},{"key":"pone.0290777.ref023","doi-asserted-by":"crossref","first-page":"626","DOI":"10.1089\/aid.2013.0287","article-title":"Development and validation of an algorithm to identify patients newly diagnosed with HIV infection from electronic health records","volume":"30","author":"MB Goetz","year":"2014","journal-title":"AIDS Res Hum Retroviruses"},{"key":"pone.0290777.ref024","doi-asserted-by":"crossref","first-page":"e28620","DOI":"10.2196\/28620","article-title":"A Phenotyping Algorithm to Identify People With HIV in Electronic Health Record Data (HIV-Phen): Development and Evaluation Study.","volume":"5","author":"SB May","year":"2021","journal-title":"JMIR Form Res"},{"key":"pone.0290777.ref025","doi-asserted-by":"crossref","first-page":"e54416","DOI":"10.1371\/journal.pone.0054416","article-title":"Application and Validation of Case-Finding Algorithms for Identifying Individuals with Human Immunodeficiency Virus from Administrative Data in British Columbia, Canada.","volume":"8","author":"B Nosyk","year":"2013","journal-title":"PloS One."},{"key":"pone.0290777.ref026","author":"A. Anderson","year":"2022","journal-title":"Validation of algorithms to identify human immunodeficiency virus cases using administrative data in Manitoba"},{"key":"pone.0290777.ref027","article-title":"Diagnostic codes in MSP claim data","author":"W. Hu","year":"1996","journal-title":"Medical Services Plan\u2014Program Monitoring and Information Management Branch, Resource Management Division;"},{"key":"pone.0290777.ref028","first-page":"443","article-title":"Multi-province epidemiological research using linked administrative data: a case study from Canada.","volume":"3","author":"AL Butler","year":"2018","journal-title":"Int J Popul Data Sci"},{"key":"pone.0290777.ref029","doi-asserted-by":"crossref","first-page":"e258","DOI":"10.17269\/cjph.104.3775","article-title":"Linking Canadian Population Health Data: Maximizing the Potential of Cohort and Administrative Data","volume":"104","author":"D Doiron","year":"2013","journal-title":"Can J Public Health Rev Can Sante Publique"},{"key":"pone.0290777.ref030","doi-asserted-by":"crossref","first-page":"152","DOI":"10.1016\/j.cjca.2012.01.005","article-title":"Mining administrative health databases to advance medical science: geographical considerations and untapped potential in Canada","volume":"28","author":"H Quan","year":"2012","journal-title":"Can J Cardiol"},{"key":"pone.0290777.ref031","year":"2016","journal-title":"BC Centre for Excellence in HIV\/AIDS. HIV Monitoring Quarterly Report For British Columbia, Fourth Quarter 2015"},{"key":"pone.0290777.ref032","article-title":"Medical Services Plan (MSP) Payment Information File.","author":"BC Ministry of Health [creator]","year":"2020","journal-title":"BC Ministry of Health [publisher]. Data extract"},{"key":"pone.0290777.ref033","article-title":"Consolidation file (MSP registration & premium billing).","author":"BC Ministry of Health [creator]","year":"2020","journal-title":"BC Ministry of Health [publisher]. Data extract"},{"key":"pone.0290777.ref034","article-title":"Discharge Abstract Database (Hospital Separations).","author":"Canadian Institute of Health information [creator]","year":"2020","journal-title":"BC Ministry of Health [publisher]. Data extract."},{"key":"pone.0290777.ref035","article-title":"PharmaNet. BC Ministry of Health [publisher]","author":"BC Ministry of Health [creator]","year":"2020","journal-title":"Data extract.;"},{"key":"pone.0290777.ref036","unstructured":"BC Centre for Disease Control. Case definition\u2014Human Immunodeficiency Virus (HIV). [cited 1 Feb 2023]. Available: http:\/\/www.bccdc.ca\/health-professionals\/clinical-resources\/case-definitions\/human-immunodeficiency-virus-(hiv)"},{"key":"pone.0290777.ref037","first-page":"355","article-title":"Accuracy of administrative database algorithms for autism spectrum disorder, attention-deficit\/hyperactivity disorder and fetal alcohol spectrum disorder case ascertainment: a systematic review","volume":"42","author":"S O\u2019Donnell","year":"2022","journal-title":"Health Promot Chronic Dis Prev Can Res Policy Pract"},{"key":"pone.0290777.ref038","doi-asserted-by":"crossref","first-page":"289","DOI":"10.1186\/s12888-014-0289-5","article-title":"Systematic review and assessment of validated case definitions for depression in administrative data.","volume":"14","author":"KM Fiest","year":"2014","journal-title":"BMC Psychiatry"},{"key":"pone.0290777.ref039","volume-title":"Canadian Institute for Health Information Discharge Abstract Database: A Validation Study.","author":"ICES","year":"2006"},{"key":"pone.0290777.ref040","author":"Canadian Institute for Health Information (CIHI)","year":"2012","journal-title":"CIHI Data Quality Study of the 2009\u20132010 Discharge Abstract Database, April 2012."},{"key":"pone.0290777.ref041","author":"Association of Public Health Epidemiologists in Ontario","year":"2012","journal-title":"Hospitalizations Data."},{"key":"pone.0290777.ref042","doi-asserted-by":"crossref","first-page":"1490","DOI":"10.1136\/gut.2009.188383","article-title":"Increasing incidence of paediatric inflammatory bowel disease in Ontario, Canada: evidence from health administrative data","volume":"58","author":"EI Benchimol","year":"2009","journal-title":"Gut"},{"key":"pone.0290777.ref043","unstructured":"Population Data BC. Medical Services Plan data set\u2014Important additional information. [cited 1 Feb 2023]. Available: https:\/\/www.popdata.bc.ca\/data\/health\/msp"},{"key":"pone.0290777.ref044","doi-asserted-by":"crossref","first-page":"1904","DOI":"10.1377\/hlthaff.2017.0014","article-title":"In British Columbia, The Supply Of Primary Care Physicians Grew, But Their Rate Of Clinical Activity Declined.","volume":"36","author":"L Hedden","year":"2017","journal-title":"Health Aff (Millwood)."},{"key":"pone.0290777.ref045","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1097\/MLR.0000000000000624","article-title":"Constructing Episodes of Inpatient Care: How to Define Hospital Transfer in Hospital Administrative Health Data?","volume":"55","author":"M Peng","year":"2017","journal-title":"Med Care."},{"key":"pone.0290777.ref046","doi-asserted-by":"crossref","first-page":"468","DOI":"10.1177\/0272989X0002000410","article-title":"Determining the area under the ROC curve for a binary diagnostic test.","volume":"20","author":"SB Cantor","year":"2000","journal-title":"Med Decis Mak Int J Soc Med Decis Mak"},{"key":"pone.0290777.ref047","doi-asserted-by":"crossref","first-page":"1","DOI":"10.4172\/2161-0487.1000197","article-title":"Five ways to look at Cohen\u2019s kappa","volume":"5","author":"MJ Warrens","year":"2015","journal-title":"J Psychol Psychother"},{"key":"pone.0290777.ref048","unstructured":"SAS Institute. Sensitivity and Specificity. [cited 22 Feb 2023]. Available: https:\/\/documentation.sas.com\/doc\/en\/pgmsascdc\/9.4_3.5\/procstat\/procstat_freq_details53.htm"},{"key":"pone.0290777.ref049","volume-title":"Base SAS 9.4 procedures guide: Statistical procedures.","author":"SAS Institute","year":"2017"},{"key":"pone.0290777.ref050","article-title":"A language and environment for statistical computing.","author":"R Core Team","year":"2023","journal-title":"Httpwww R-Proj Org"},{"key":"pone.0290777.ref051","unstructured":"UNAIDS. New global pledge to end all inequalities faced by communities and people affected by HIV towards ending AIDS. [cited 22 Mar 2023]. Available: https:\/\/www.unaids.org\/en\/resources\/presscentre\/pressreleaseandstatementarchive\/2021\/june\/20210608_hlm-opens"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0290777","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,31]],"date-time":"2023-08-31T17:36:02Z","timestamp":1693503362000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0290777"}},"subtitle":[],"editor":[{"given":"Edward","family":"Nicol","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2023,8,31]]},"references-count":51,"journal-issue":{"issue":"8","published-online":{"date-parts":[[2023,8,31]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0290777","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,8,31]]}}}