Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository

Administrative health data, such as the Hospital Episode Statistics (HES), can be used to identify groups of people with a particular target condition, a process known as phenotyping. Clinical phenotypes are useful as exposures, covariates and outcomes in research studies using administrative data,...

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Main Authors: Matthew A Jay, Kate Lewis, Difei Shi, Rebecca Langella, Tony Stone, Sorcha Ní Chobhthaigh, Ania Zylbersztejn, Ruth Blackburn, Katie Harron
Format: Article
Language:English
Published: Swansea University 2025-05-01
Series:International Journal of Population Data Science
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Online Access:https://ijpds.org/article/view/2943
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author Matthew A Jay
Kate Lewis
Difei Shi
Rebecca Langella
Tony Stone
Sorcha Ní Chobhthaigh
Ania Zylbersztejn
Ruth Blackburn
Katie Harron
author_facet Matthew A Jay
Kate Lewis
Difei Shi
Rebecca Langella
Tony Stone
Sorcha Ní Chobhthaigh
Ania Zylbersztejn
Ruth Blackburn
Katie Harron
author_sort Matthew A Jay
collection DOAJ
description Administrative health data, such as the Hospital Episode Statistics (HES), can be used to identify groups of people with a particular target condition, a process known as phenotyping. Clinical phenotypes are useful as exposures, covariates and outcomes in research studies using administrative data, including health data linked to other sources such as the Education and Child Health Insights from Linked Data (ECHILD) project. ECHILD brings together HES and other national health datasets with the National Pupil Database and children's social care data for all of England as a data asset that can be accessed by researchers at UK institutions. Because using linked administrative data is complex, the ECHILD team has created additional resources to improve the accessibility of ECHILD. One such initiative is the ECHILD Phenotype Code List Repository. The Repository is a fully open and searchable website containing phenotype code lists that can be used in ECHILD and beyond. As well as a primer on phenotyping, it includes summaries of each code list and R and Stata implementation scripts. The Repository was designed according to a set of principles to ensure that finding and using code lists is easy and standardised. The ECHILD Phenotype Code List Repository is a step forward in the findability and use of phenotype code lists in ECHILD and its constituent datasets.
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publishDate 2025-05-01
publisher Swansea University
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series International Journal of Population Data Science
spelling doaj-art-1d20c8046db34e2b8fe03485ce5460622025-08-20T03:49:41ZengSwansea UniversityInternational Journal of Population Data Science2399-49082025-05-0110210.23889/ijpds.v10i2.2943Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repositoryMatthew A Jay0Kate Lewis1Difei Shi2Rebecca Langella3Tony Stone4Sorcha Ní Chobhthaigh5Ania Zylbersztejn6Ruth Blackburn7Katie Harron8University College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EH; Sheffield Centre for Health and Related Research, The University of Sheffield, Sheffield, UKUniversity College London Institute of Global Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EHUniversity College London Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EH Administrative health data, such as the Hospital Episode Statistics (HES), can be used to identify groups of people with a particular target condition, a process known as phenotyping. Clinical phenotypes are useful as exposures, covariates and outcomes in research studies using administrative data, including health data linked to other sources such as the Education and Child Health Insights from Linked Data (ECHILD) project. ECHILD brings together HES and other national health datasets with the National Pupil Database and children's social care data for all of England as a data asset that can be accessed by researchers at UK institutions. Because using linked administrative data is complex, the ECHILD team has created additional resources to improve the accessibility of ECHILD. One such initiative is the ECHILD Phenotype Code List Repository. The Repository is a fully open and searchable website containing phenotype code lists that can be used in ECHILD and beyond. As well as a primer on phenotyping, it includes summaries of each code list and R and Stata implementation scripts. The Repository was designed according to a set of principles to ensure that finding and using code lists is easy and standardised. The ECHILD Phenotype Code List Repository is a step forward in the findability and use of phenotype code lists in ECHILD and its constituent datasets. https://ijpds.org/article/view/2943ECHILDOpen sciencePhenotypingRepository
spellingShingle Matthew A Jay
Kate Lewis
Difei Shi
Rebecca Langella
Tony Stone
Sorcha Ní Chobhthaigh
Ania Zylbersztejn
Ruth Blackburn
Katie Harron
Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository
International Journal of Population Data Science
ECHILD
Open science
Phenotyping
Repository
title Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository
title_full Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository
title_fullStr Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository
title_full_unstemmed Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository
title_short Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository
title_sort open science and phenotyping in uk administrative health education and social care data the echild phenotype code list repository
topic ECHILD
Open science
Phenotyping
Repository
url https://ijpds.org/article/view/2943
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