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Published in: BMC Medical Informatics and Decision Making 1/2020

01-12-2020 | Care | Research article

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

Authors: Alex Bottle, Carole Cohen, Amanda Lucas, Kavitha Saravanakumar, Zia Ul-Haq, Wayne Smith, Azeem Majeed, Paul Aylin

Published in: BMC Medical Informatics and Decision Making | Issue 1/2020

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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.
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Literature
3.
go back to reference Hippisley-Cox J, Stables D, Pringle M. QRESEARCH: a new general practice database for research. Inform Prim Care. 2004;12(1):49–50. Hippisley-Cox J, Stables D, Pringle M. QRESEARCH: a new general practice database for research. Inform Prim Care. 2004;12(1):49–50.
4.
go back to reference Herrett E, Gallagher AM, Bhaskaran K, Forbes H, Mathur R, van Staa T, Smeeth L. Data resource profile: clinical practice research Datalink (CPRD). Internat J Epidemiol. 2015;44(3):827–36.CrossRef Herrett E, Gallagher AM, Bhaskaran K, Forbes H, Mathur R, van Staa T, Smeeth L. Data resource profile: clinical practice research Datalink (CPRD). Internat J Epidemiol. 2015;44(3):827–36.CrossRef
8.
go back to reference Bottle A, Aylin P, Majeed A. Identifying patients at risk of emergency hospital admissions: a logistic regression analysis. J Royal Soc Med. 2006;99:406–14.CrossRef Bottle A, Aylin P, Majeed A. Identifying patients at risk of emergency hospital admissions: a logistic regression analysis. J Royal Soc Med. 2006;99:406–14.CrossRef
9.
go back to reference Gale C, Morris I on behalf of the Neonatal Data Analysis Unit (NDAU) Steering Board. The UK National Neonatal Research Database: using neonatal data for research, quality improvement and more. Arch Dis Child - Educ Pract. 2016;101:216–8.CrossRef Gale C, Morris I on behalf of the Neonatal Data Analysis Unit (NDAU) Steering Board. The UK National Neonatal Research Database: using neonatal data for research, quality improvement and more. Arch Dis Child - Educ Pract. 2016;101:216–8.CrossRef
13.
go back to reference Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why care.Data ran into trouble. J Med Ethics. 2015;41:404–9.CrossRef Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why care.Data ran into trouble. J Med Ethics. 2015;41:404–9.CrossRef
14.
go back to reference Rothnie KJ, Chandan JS, Goss HG, Müllerová H, Quint JK. Validity and interpretation of spirometric recordings to diagnose COPD in UK primary care. Int J Chron Obstruct Pulmon Dis. 2017;12:1663–8.CrossRef Rothnie KJ, Chandan JS, Goss HG, Müllerová H, Quint JK. Validity and interpretation of spirometric recordings to diagnose COPD in UK primary care. Int J Chron Obstruct Pulmon Dis. 2017;12:1663–8.CrossRef
15.
go back to reference Kontopantelis E, Reeves D, Valderas JM, Campbell S, Doran T. Recorded quality of primary care for patients with diabetes in England before and after the introduction of a financial incentive scheme: a longitudinal observational study. BMJ Qual Saf. 2013;22(1):53–64.CrossRef Kontopantelis E, Reeves D, Valderas JM, Campbell S, Doran T. Recorded quality of primary care for patients with diabetes in England before and after the introduction of a financial incentive scheme: a longitudinal observational study. BMJ Qual Saf. 2013;22(1):53–64.CrossRef
Metadata
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
Authors
Alex Bottle
Carole Cohen
Amanda Lucas
Kavitha Saravanakumar
Zia Ul-Haq
Wayne Smith
Azeem Majeed
Paul Aylin
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Medical Informatics and Decision Making / Issue 1/2020
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-020-1082-7

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