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
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Published version
Author(s)
Type
Journal Article
Abstract
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.
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.
Date Issued
2020-04-20
Date Acceptance
2020-03-27
Citation
BMC Medical Informatics and Decision Making, 2020, 20
ISSN
1472-6947
Publisher
BioMed Central
Journal / Book Title
BMC Medical Informatics and Decision Making
Volume
20
Copyright Statement
© The Author(s). 2020. This 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.
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.
Sponsor
Dr Foster Intelligence
National Institute for Health Research
National Institute for Health Research
National Institute for Health Research
Grant Number
n/a
HPRU-2012-10047
HPRU-2012-10047
n/a
Subjects
Clinical practice research Datalink
Data warehousing
Electronic medical records
Integrated care
Real world evidence
0806 Information Systems
1103 Clinical Sciences
Medical Informatics
Publication Status
Published
Article Number
ARTN 71