{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T17:23:56Z","timestamp":1787505836463,"version":"build-2736575974"},"update-to":[{"DOI":"10.12688\/wellcomeopenres.19470.1","type":"new_version","label":"New version","source":"publisher","updated":{"date-parts":[[2024,6,19]],"date-time":"2024-06-19T00:00:00Z","timestamp":1718755200000}}],"reference-count":31,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2024,6,19]],"date-time":"2024-06-19T00:00:00Z","timestamp":1718755200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000265","name":"Medical Research Council","doi-asserted-by":"publisher","award":["MR\/S003797\/1"],"award-info":[{"award-number":["MR\/S003797\/1"]}],"id":[{"id":"10.13039\/501100000265","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100022512","name":"THIS Institute, University of Cambridge","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100022512","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100023699","name":"Health Data Research UK","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100023699","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100002141","name":"public health england","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100002141","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"crossref","award":["206602"],"award-info":[{"award-number":["206602"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"crossref","award":["220283"],"award-info":[{"award-number":["220283"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000691","name":"Academy of medical sciences","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100000691","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["wellcomeopenresearch.org"],"crossmark-restriction":false},"short-container-title":["Wellcome Open Res"],"abstract":"<ns5:p>Background Electronic health records (EHRs) have the potential to be used to produce detailed disease burden estimates. In this study we created disease estimates using national EHR for three high burden conditions, compared estimates between linked and unlinked datasets and produced stratified estimates by age, sex, ethnicity, socio-economic deprivation and geographical region. Methods EHRs containing primary care (Clinical Practice Research Datalink), secondary care (Hospital Episode Statistics) and mortality records (Office for National Statistics) were used. We used existing disease phenotyping algorithms to identify cases of cancer (breast, lung, colorectal and prostate), type 1 and 2 diabetes, and lower back pain. We calculated age-standardised incidence of first cancer, point prevalence for diabetes, and primary care consultation prevalence for low back pain. Results 7.2 million people contributing 45.3 million person-years of active follow-up between 2000\u20132014 were included. CPRD-HES combined and CPRD-HES-ONS combined lung and bowel cancer incidence estimates by sex were similar to cancer registry estimates. Linked CPRD-HES estimates for combined Type 1 and Type 2 diabetes were consistently higher than those of CPRD alone, with the difference steadily increasing over time from 0.26% (2.99% for CPRD-HES vs. 2.73 for CPRD) in 2002 to 0.58% (6.17% vs. 5.59) in 2013. Low back pain prevalence was highest in the most deprived quintile and when compared to the least deprived quintile the difference in prevalence increased over time between 2000 and 2013, with the largest difference of 27% (558.70 per 10,000 people vs 438.20) in 2013. Conclusions We use national EHRs to produce estimates of burden of disease to produce detailed estimates by deprivation, ethnicity and geographical region. National EHRs have the potential to improve disease burden estimates at a local and global level and may serve as more automated, timely and precise inputs for policy making and global burden of disease estimation.<\/ns5:p>","DOI":"10.12688\/wellcomeopenres.19470.2","type":"journal-article","created":{"date-parts":[[2024,6,19]],"date-time":"2024-06-19T13:10:40Z","timestamp":1718802640000},"page":"262","update-policy":"https:\/\/doi.org\/10.12688\/wellcomeopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":2,"title":["Estimating disease burden using national linked electronic health records: a study using an English population-based cohort."],"prefix":"10.12688","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0542-0816","authenticated-orcid":false,"given":"Robert W.","family":"Aldridge","sequence":"first","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah E. R.","family":"Evans","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4100-4257","authenticated-orcid":false,"given":"Alexei","family":"Yavlinsky","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alireza","family":"Moayyeri","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5364-8757","authenticated-orcid":false,"given":"Krishnan","family":"Bhaskaran","sequence":"additional","affiliation":[{"name":"Faculty of Epidemiology & Population Health London WC1E 7HT London School of Hygiene and Tropical Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3817-8790","authenticated-orcid":false,"given":"Rohini","family":"Mathur","sequence":"additional","affiliation":[{"name":"Wolfson Institute of Population Health London England EC1M 6BQ Queen Mary University of London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelvin P.","family":"Jordan","sequence":"additional","affiliation":[{"name":"School of Medicine Staffordshire England ST5 5BG Keele University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Croft","sequence":"additional","affiliation":[{"name":"School of Medicine Staffordshire England ST5 5BG Keele University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9612-7791","authenticated-orcid":false,"given":"Spiros","family":"Denaxas","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anoop D.","family":"Shah","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruth M.","family":"Blackburn","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henrik","family":"Moller","sequence":"additional","affiliation":[{"name":"Cancer Epidemiology & Population Health London England WC2R 2LS King's College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3923-0802","authenticated-orcid":false,"given":"Edmond S. W.","family":"Ng","sequence":"additional","affiliation":[{"name":"Faculty of Epidemiology & Population Health London WC1E 7HT London School of Hygiene and Tropical Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Hughes","sequence":"additional","affiliation":[{"name":"Department of Health and Social Care London SW1H 0EU Office for Health Improvement and Disparities"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sebastian","family":"Fox","sequence":"additional","affiliation":[{"name":"Department of Health and Social Care London SW1H 0EU Office for Health Improvement and Disparities"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julian","family":"Flowers","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jurgen","family":"Schmidt","sequence":"additional","affiliation":[{"name":"Department of Health and Social Care London SW1H 0EU Office for Health Improvement and Disparities"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Hayward","sequence":"additional","affiliation":[{"name":"Institute of Epidemiology and Health Care London England WC1E 6BT University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9347-2709","authenticated-orcid":false,"given":"Ruth","family":"Gilbert","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9168-6022","authenticated-orcid":false,"given":"Liam","family":"Smeeth","sequence":"additional","affiliation":[{"name":"Faculty of Epidemiology & Population Health London WC1E 7HT London School of Hygiene and Tropical Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harry","family":"Hemingway","sequence":"additional","affiliation":[{"name":"Institute of Health Informatics London England NW1 2DA University College London"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2560","published-online":{"date-parts":[[2024,6,19]]},"reference":[{"key":"ref-1","doi-asserted-by":"publisher","first-page":"827-836","DOI":"10.1093\/ije\/dyv098","article-title":"Data resource profile: Clinical Practice Research Datalink (CPRD).","volume":"44","author":"E Herrett","year":"2015","journal-title":"Int J Epidemiol."},{"key":"ref-2","doi-asserted-by":"publisher","first-page":"1647-1661","DOI":"10.1016\/S0140-6736(18)32207-4","article-title":"Changes in health in the countries of the UK and 150 English Local Authority areas 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016.","volume":"392","author":"N Steel","year":"2018","journal-title":"Lancet."},{"key":"ref-3","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-012785","article-title":"Evolution of primary care databases in UK: a scientometric analysis of research output.","volume":"6","author":"P Vezyridis","year":"2016","journal-title":"BMJ Open."},{"key":"ref-4","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-020738","article-title":"Spatial distribution of clinical computer systems in primary care in England in 2016 and implications for primary care electronic medical record databases: a cross-sectional population study.","volume":"8","author":"E Kontopantelis","year":"2018","journal-title":"BMJ Open."},{"key":"ref-5","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.f2350","article-title":"Completeness and diagnostic validity of recording acute myocardial infarction events in primary care, hospital care, disease registry, and national mortality records: cohort study.","volume":"346","author":"E Herrett","year":"2013","journal-title":"BMJ."},{"key":"ref-6","article-title":"Read Codes - NHS Digital"},{"key":"ref-7","doi-asserted-by":"publisher","first-page":"91-99","DOI":"10.1007\/s10654-018-0442-4","article-title":"Approach to record linkage of primary care data from Clinical Practice Research Datalink to other health-related patient data: overview and implications.","volume":"34","author":"S Padmanabhan","year":"2019","journal-title":"Eur J Epidemiol."},{"key":"ref-8","article-title":"ICD-10 Version: 2010.","year":"2010"},{"key":"ref-9","article-title":"English indices of deprivation 2019","year":"2019"},{"key":"ref-10","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e2697","article-title":"Angiotensin receptor blockers and risk of cancer: cohort study among people receiving antihypertensive drugs in UK General Practice Research Database.","volume":"344","author":"K Bhaskaran","year":"2012","journal-title":"BMJ."},{"key":"ref-11","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0162388","article-title":"Algorithms for the Capture and Adjudication of prevalent and incident diabetes in UK Biobank.","volume":"11","author":"S Eastwood","year":"2016","journal-title":"PLoS One."},{"key":"ref-12","doi-asserted-by":"publisher","first-page":"212-8","DOI":"10.1136\/annrheumdis-2012-202634","article-title":"International comparisons of the consultation prevalence of musculoskeletal conditions using population-based healthcare data from England and Sweden.","volume":"73","author":"K Jordan","year":"2014","journal-title":"Ann Rheum Dis."},{"key":"ref-13","article-title":"Cancer registration statistics, England"},{"key":"ref-14","article-title":"UCL-Public-Health-Data-Science\/ehr_disease_burden: Extended data for Estimating disease burden using national linked electronic health records: a study using an English population-based cohort (public)","author":"R Aldridge","year":"2023","journal-title":"Zenodo."},{"key":"ref-15","doi-asserted-by":"publisher","first-page":"684-92","DOI":"10.1093\/pubmed\/fdt116","article-title":"Completeness and usability of ethnicity data in UK-based primary care and hospital databases.","volume":"36","author":"R Mathur","year":"2014","journal-title":"J Public Health (Oxf)."},{"key":"ref-16","doi-asserted-by":"publisher","DOI":"10.17037\/PUBS.02478832","article-title":"Ethnic inequalities in health and use of healthcare in the UK: how computerised health records can contribute substantively to the knowledge base","author":"R Mathur","year":"2015"},{"key":"ref-17","doi-asserted-by":"publisher","first-page":"443-51","DOI":"10.1002\/pds.1115","article-title":"The relationship between time since registration and measured incidence rates in the General Practice Research Database.","volume":"14","author":"J Lewis","year":"2005","journal-title":"Pharmacoepidemiol Drug Saf."},{"key":"ref-18","doi-asserted-by":"publisher","first-page":"e512-e523","DOI":"10.3399\/bjgp18X697973","article-title":"Chronic Kidney Disease and cause-specific hospitalisation: a matched cohort study using primary and secondary care patient data.","volume":"68","author":"M Iwagami","year":"2018","journal-title":"Br J Gen Pract."},{"key":"ref-19","doi-asserted-by":"publisher","first-page":"543-9","DOI":"10.1136\/sti.2009.035865","article-title":"Primary care consultations and costs among HIV-positive individuals in UK primary care 1995-2005: a cohort study.","volume":"85","author":"H Evans","year":"2009","journal-title":"Sex Transm Infect."},{"key":"ref-20","article-title":"SNOMED CT"},{"key":"ref-21","doi-asserted-by":"publisher","first-page":"179-189","DOI":"10.2147\/CLEP.S337323","article-title":"Trends in the annual consultation incidence and prevalence of low back pain and osteoarthritis in England from 2000 to 2019: comparative estimates from two clinical practice databases.","volume":"14","author":"D Yu","year":"2022","journal-title":"Clin Epidemiol."},{"key":"ref-22","doi-asserted-by":"publisher","first-page":"1977-1986","DOI":"10.1093\/jamia\/ocaa186","article-title":"Electronic Health Record-Based Disease surveillance systems: a systematic literature review on challenges and solutions.","volume":"27","author":"A Aliabadi","year":"2020","journal-title":"J Am Med Inform Assoc."},{"key":"ref-23","doi-asserted-by":"publisher","DOI":"10.13063\/2327-9214.1267","article-title":"Can Electronic Health Records be used for population health surveillance? Validating population health metrics against established survey data.","volume":"4","author":"K McVeigh","year":"2016","journal-title":"EGEMS (Wash DC)."},{"key":"ref-24","doi-asserted-by":"publisher","first-page":"4832-4843","DOI":"10.1093\/rheumatology\/keab109","article-title":"Estimating the population health burden of musculoskeletal conditions using primary care electronic health records.","volume":"60","author":"D Yu","year":"2021","journal-title":"Rheumatology (Oxford)."},{"key":"ref-25","doi-asserted-by":"publisher","first-page":"203-206","DOI":"10.1097\/PHH.0000000000001501","article-title":"New directions in public health surveillance: using electronic health records to monitor chronic disease.","volume":"28","author":"E Kraus","year":"2022","journal-title":"J Public Health Manag Pract."},{"key":"ref-26","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.121.024409","article-title":"Establishing a national Cardiovascular disease surveillance system in the united states using Electronic Health Record data: key strengths and limitations.","volume":"11","author":"B Williams","year":"2022","journal-title":"J Am Heart Assoc."},{"key":"ref-27","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-020282","article-title":"Incidence and prevalence of cardiovascular disease in English primary care: a cross-sectional and follow-up study of the Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC).","volume":"8","author":"W Hinton","year":"2018","journal-title":"BMJ Open."},{"key":"ref-28","doi-asserted-by":"publisher","first-page":"1625-38","DOI":"10.1093\/ije\/dys188","article-title":"Data resource profile: Cardiovascular disease research using Linked Bespoke studies and Electronic health records (CALIBER).","volume":"41","author":"S Denaxas","year":"2012","journal-title":"Int J Epidemiol."},{"key":"ref-29","doi-asserted-by":"publisher","first-page":"186-93","DOI":"10.1183\/13993003.01033-2015","article-title":"Changes in the incidence, prevalence and mortality of bronchiectasis in the UK from 2004 to 2013: a population-based cohort study.","volume":"47","author":"J Quint","year":"2016","journal-title":"Eur Respir J."},{"key":"ref-30","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-011092","article-title":"Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC) sentinel network: a cohort profile.","volume":"6","author":"A Correa","year":"2016","journal-title":"BMJ Open."},{"key":"ref-31","doi-asserted-by":"publisher","first-page":"e63-77","DOI":"10.1016\/S2589-7500(19)30012-3","article-title":"A chronological map of 308 physical and mental health conditions from 4 million individuals in the English National Health Service.","volume":"1","author":"V Kuan","year":"2019","journal-title":"Lancet Digit Health."}],"container-title":["Wellcome Open Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2\/pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2\/iparadigms","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T17:04:08Z","timestamp":1787504648000},"score":1,"resource":{"primary":{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,6,19]]},"references-count":31,"URL":"https:\/\/doi.org\/10.12688\/wellcomeopenres.19470.2","relation":{"has-version":[{"id-type":"doi","id":"10.12688\/wellcomeopenres.19470.1","asserted-by":"subject"}],"has-review":[{"id-type":"doi","id":"10.21956\/wellcomeopenres.23730.r87196","asserted-by":"subject"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.23730.r87195","asserted-by":"subject"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.23730.r87195","asserted-by":"object"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.23730.r87196","asserted-by":"object"}]},"ISSN":["2398-502X"],"issn-type":[{"value":"2398-502X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,6,19]]},"assertion":[{"value":"Indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2#article-reports","order":0,"name":"referee-status","label":"Referee status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.21956\/wellcomeopenres.23730.r87195, Thadd\u00e4us T\u00f6nnies, Leibniz Center for Diabetes Research at the Heinrich Heine University, D\u00fcsseldorf, 20 Jun 2024, version 2, indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2#referee-response-87195","order":0,"name":"referee-response-87195","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.21956\/wellcomeopenres.23730.r87196, Joyce C Ho, Emory University, Atlanta, 31 Jul 2024, version 2, indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/8-262\/v2#referee-response-87196","order":1,"name":"referee-response-87196","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"RWA is supported by a Wellcome Trust Clinical Research Career Development Fellowship (206602). KB holds a Wellcome Senior Research Fellowship (grant number 220283\/Z\/20\/Z). ADS is supported by a postdoctoral fellowship from THIS Institute. RM is supported by a postdoctoral fellowship from the Wellcome Trust. RB is supported by a UKRI Innovation Fellowship [https:\/\/www.ukri.org\/] funded by the Medical Research Council (Grant No: MR\/S003797\/1).  HH and RG are National Institute for Health Research (NIHR) Senior Investigators. HH\u2019s work is supported by: 1. Health Data Research UK, which is funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation and Wellcome Trust. 2. The BigData@Heart Consortium, funded by the Innovative Medicines Initiative-2 Joint Undertaking under grant agreement No. 116074. This Joint Undertaking receives support from the European Union\u2019s Horizon 2020 research and innovation programme and EFPIA; it is chaired, by DE Grobbee and SD Anker, partnering with 20 academic and industry partners and ESC. 3. The National Institute for Health Research University College London Hospitals Biomedical Research Centre. SD is supported from an Alan Turing Fellowship. KJ is supported by matched funding awarded to the NIHR Applied Research Collaboration (West Midlands). The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. KB holds a Sir Henry Dale Fellowship jointly funded by Wellcome and the Royal Society. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":2,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}