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How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink

BACKGROUND: In the UK, several initiatives have resulted in the creation of local data warehouses of electronic patient records. Originally developed for commissioning and direct patient care, they are potentially useful for research, but little is known about them outside their home area. We descri...

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Autores principales: Bottle, Alex, Cohen, Carole, Lucas, Amanda, Saravanakumar, Kavitha, Ul-Haq, Zia, Smith, Wayne, Majeed, Azeem, Aylin, Paul
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7171852/
https://www.ncbi.nlm.nih.gov/pubmed/32312259
http://dx.doi.org/10.1186/s12911-020-1082-7
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author Bottle, Alex
Cohen, Carole
Lucas, Amanda
Saravanakumar, Kavitha
Ul-Haq, Zia
Smith, Wayne
Majeed, Azeem
Aylin, Paul
author_facet Bottle, Alex
Cohen, Carole
Lucas, Amanda
Saravanakumar, Kavitha
Ul-Haq, Zia
Smith, Wayne
Majeed, Azeem
Aylin, Paul
author_sort Bottle, Alex
collection PubMed
description BACKGROUND: In the UK, several initiatives have resulted in the creation of local data warehouses of electronic patient records. Originally developed for commissioning and direct patient care, they are potentially useful for research, but little is known about them outside their home area. We describe one such local warehouse, the Whole Systems Integrated Care (WSIC) database in NW London, and its potential for research as the “Discover” platform. We compare Discover with the Clinical Practice Research Datalink (CPRD), a popular UK research database also based on linked primary care records. METHODS: We describe the key features of the Discover database, including scope, architecture and governance; descriptive analyses compare the population demographics and chronic disease prevalences with those in CPRD. RESULTS: As of June 2019, Discover held records for a total of 2.3 million currently registered patients, or 95% of the NW London population; CPRD held records for over 11 million. The Discover population matches the overall age-sex distribution of the UK and CPRD but is more ethnically diverse. Most Discover chronic disease prevalences were comparable to the national rates. Unlike CPRD, Discover has identifiable care organisations and postcodes, allowing mapping and linkage to healthcare provider variables such as staffing, and includes contacts with social, community and mental health care. Discover also includes a consent-to-contact register of over 3000 volunteers to date for prospective studies. CONCLUSIONS: Like CPRD, Discover has been a number of years in the making, is a valuable research tool, and can serve as a model for other areas developing similar data warehouses.
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spelling pubmed-71718522020-04-24 How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink Bottle, Alex Cohen, Carole Lucas, Amanda Saravanakumar, Kavitha Ul-Haq, Zia Smith, Wayne Majeed, Azeem Aylin, Paul BMC Med Inform Decis Mak Research Article BACKGROUND: In the UK, several initiatives have resulted in the creation of local data warehouses of electronic patient records. Originally developed for commissioning and direct patient care, they are potentially useful for research, but little is known about them outside their home area. We describe one such local warehouse, the Whole Systems Integrated Care (WSIC) database in NW London, and its potential for research as the “Discover” platform. We compare Discover with the Clinical Practice Research Datalink (CPRD), a popular UK research database also based on linked primary care records. METHODS: We describe the key features of the Discover database, including scope, architecture and governance; descriptive analyses compare the population demographics and chronic disease prevalences with those in CPRD. RESULTS: As of June 2019, Discover held records for a total of 2.3 million currently registered patients, or 95% of the NW London population; CPRD held records for over 11 million. The Discover population matches the overall age-sex distribution of the UK and CPRD but is more ethnically diverse. Most Discover chronic disease prevalences were comparable to the national rates. Unlike CPRD, Discover has identifiable care organisations and postcodes, allowing mapping and linkage to healthcare provider variables such as staffing, and includes contacts with social, community and mental health care. Discover also includes a consent-to-contact register of over 3000 volunteers to date for prospective studies. CONCLUSIONS: Like CPRD, Discover has been a number of years in the making, is a valuable research tool, and can serve as a model for other areas developing similar data warehouses. BioMed Central 2020-04-20 /pmc/articles/PMC7171852/ /pubmed/32312259 http://dx.doi.org/10.1186/s12911-020-1082-7 Text en © The Author(s). 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research Article
Bottle, Alex
Cohen, Carole
Lucas, Amanda
Saravanakumar, Kavitha
Ul-Haq, Zia
Smith, Wayne
Majeed, Azeem
Aylin, Paul
How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink
title How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink
title_full How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink
title_fullStr How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink
title_full_unstemmed How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink
title_short How an electronic health record became a real-world research resource: comparison between London’s Whole Systems Integrated Care database and the Clinical Practice Research Datalink
title_sort how an electronic health record became a real-world research resource: comparison between london’s whole systems integrated care database and the clinical practice research datalink
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7171852/
https://www.ncbi.nlm.nih.gov/pubmed/32312259
http://dx.doi.org/10.1186/s12911-020-1082-7
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