Linking health and education data for research to improve outcomes for children in England

Lead Research Organisation: University College London
Department Name: Institute of Child Health

Abstract

Education and health are deeply connected in childhood and adolescence. These links are particularly important for vulnerable or disadvantaged children, for whom challenges in one domain often occur alongside or cause difficulties in the other. Whilst Scotland, Wales and the Nordic countries are increasingly using linked data to improve health and education for children with chronic conditions, use in England is patchy. This project will bridge this gap in knowledge by linking education and health data for all children in England. Our aim is to create a research-ready dataset, the All Years Dataset, which can be used in future research to improve outcomes for children in England.

Firstly, we will carry out strategic research based on an existing linked education-health dataset of a subset of 2 million children. Evidence on the accuracy of linkage between health and education data will be used to improve the All Years Dataset. We will produce research to show how the data can be used to inform policy and produce a manual, or metadata, to help future researchers to understand and use the dataset. We will involve the public in developing priorities for future studies using the All Years Dataset. The All Years Dataset will link children across two datasets. The National Pupil Database, which contains education records for all children in England from 2002 onwards and Hospital Episode Statistics, which contains information on hospital care from 1997 onwards. The linked dataset will be anonymised, meaning that it does not contain any personal information that could directly identify someone. The data will be analysed in secure environments, hosted by the Office of National Statistics and by NHS Digital. Access to these environments will be strictly controlled. No record level data will be able to be taken out of these environments and summary data will be checked before being released. The project will facilitate future research across a range of health and social science disciplines and will support research to improve policymaking for children's health, education and wellbeing.

Planned Impact

Education and health are deeply connected in childhood and adolescence. These links are particularly important for vulnerable or disadvantaged children, for whom challenges in one domain often occur alongside or cause difficulties in the other. For example, children with chronic health conditions tend to be heavy users of both hospital and educational support services and have high rates of school absence and poor school performance.

The creation of a large linked health-education dataset will enable researchers and government analysts to delve into these complex issues and produce reliable and policy-relevant research. Two exemplar studies will be conducted as part of our strategic research to demonstrate the dataset's value for policy in two specific areas: predicting academic performance based on measures of early social disadvantage and health, and evaluating school absences and performance among children with chronic health conditions.

Publications

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Grath-Lone L (2021) Ethnic bias in data linkage in The Lancet Digital Health

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Libuy N (2021) Linking education and hospital data in England: linkage process and quality in International Journal of Population Data Science

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Elizabeth Waind (2021) ECHILD Stakeholder Event Report

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Mc Grath-Lone L (2022) Data Resource Profile: The Education and Child Health Insights from Linked Data (ECHILD) Database. in International journal of epidemiology

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Mc Grath-Lone L (2022) What makes administrative data research-ready? A systematic review and thematic analysis of published literature in International Journal of Population Data Science

 
Description ECHILD stands for Education and Child Health Insights from Linked Data. ECHILD aims to link administrative data for all children in England from education, social care and hospital services. Our first objective was to validate the linkage accuracy and assess potential biases.
We applied multi-step rule-based linkage algorithms to 4 one-year cohorts of children born 1 September-31 August in 1990/1, 1996/7, 1999/00 and 2004/5. In stage 1, full names, date of birth, and postcode histories from education data in the National Pupil Database were linked to the NHS Personal Demographic Service. In stage 2, NHS number, postcode, date of birth and sex were linked to hospital records in Hospital Episode Statistics. Since June 2021, we have been able to access linked education and hospital data for all children in England born from 1995. The data has been used to produce reports for DHSC, and has been presented at seminars for ADRUK, HDRUK, Institute for Government, DfE and DHSC. The objective of making ECHILD available to external researchers has not yet been achieved, but options are being productively pursued. Funding is being extended to enable the UCL team to support wider use under licence, if granted by NHS DIgital
Exploitation Route The purpose of this award is to enable wider use of linked administrative data for research across government and academia.

Future research could provide important evidence to inform decisions by children and families about their expected needs and outcomes, and by service providers and policy makers about resource needs, equitable provision of services, which groups are most likely to benefit from targeted services, how education, social care and health can support children and families more effectively across the child life course, and the effectiveness of specific interventions (eg SEND provision).

Future research could enhance this resource by adding data (eg by linking families, adding more accurate measures of house income deprivation, linking to primary care data), by improving connectivity with cohorts, surveys and trials, and enhancing interoperability with similar resources in other UK countries.
Sectors Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice

URL https://www.ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-department/cenb-clinical-20
 
Description Our findings on the feasibility and accuracy of linkage between education and hospital data for children in England has been used by ADR UK and NHS Digital, DHSC, Dept for Education to plan further linkages and use of the ECHILD database. We have also published findings of a study, comissioned by DHSC through the NIHR Policy Research Programme, on the impact of the COVID pandemic on vulnerable children. These findings have been shared with the Chief Scientific Advisory, Lucy Chappell, and the NHS England Clinical Director, Simon Kenny. See list of publications
First Year Of Impact 2021
Sector Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice
Impact Types Societal,Policy & public services

 
Description "The SPECIAL study" - SPecial Educational needs provision to Improve Child heALth
Amount £1,445,777 (GBP)
Funding ID 202025 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 08/2021 
End 07/2024
 
Description COVID ECHILD study: impact of the pandemic on vulnerable children
Amount £64,000 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 06/2020 
End 06/2021
 
Description Enhancement of ECHILD with a mother-child and Unique Property Reference number link
Amount £268,461 (GBP)
Funding ID ES/X000427/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2022 
End 08/2024
 
Description Linking health and education data for research to improve outcomes for children in England - Supplement
Amount £383,497 (GBP)
Funding ID ES/X003663/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2022 
End 08/2024
 
Title ECHILD database: Education and Child Health Insights from Linked Data 
Description Links education, social care and hospitalisation data for 14.7 million children in England born from 1995. Purpose is for re-use for research 
Type Of Material Database/Collection of data 
Year Produced 2021 
Provided To Others? Yes  
Impact The data will be made available from later in 2022. 
URL https://www.ucl.ac.uk/child-health/echild
 
Description Cambridge University Department of Psychiatry 
Organisation University of Cambridge
Department Department of Psychiatry
Country United Kingdom 
Sector Academic/University 
PI Contribution I am principal investigator for this NIHR programme award.
Collaborator Contribution Prof Tamsin Ford is leading a workpackage within the programme and her team bring clinical and schools expertise.
Impact none as yet
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation Anna Freud Centre
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation Institute for Fiscal Studies
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation University College London
Department Institute of Child Health
Country United Kingdom 
Sector Academic/University 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation University College London
Department Institute of Education (IOE)
Country United Kingdom 
Sector Academic/University 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation University of Cambridge
Country United Kingdom 
Sector Academic/University 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description Children and Families Policy Research Unit (CPRU) 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution The Children and Families Policy Research Unit (CPRU) is one of 15 National Institute of Health Research (NIHR) Policy Research Units that undertake research to inform decision-making by government and arms-length bodies. The units work closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Collaborator Contribution Collaboration on ECHILD strategic research on changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people.
Impact Policy Briefing Report: Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people
Start Year 2020
 
Description ECHILD Strategic Research Collaboration 
Organisation Institute for Fiscal Studies
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Research collaboration to deliver strategic research exemplar studies using the ECHILD database. Research into the relative importance of early health, skills and disadvantage in predicting later educational attainment; the importance of health, skills and disadvantage changes over the lifecycle and whether early health continues to matter over and above later health and attainment. Research into the impact of the Covid-19 pandemic on the timing of repair surgery for children born with an oral cleft in England, and implications of delays for educational outcomes.
Collaborator Contribution Research collaboration to deliver strategic research exemplar studies using the ECHILD database.
Impact Preprint publications, with manuscripts currently being prepared.
Start Year 2020
 
Description ECHILD Strategic Research Collaboration 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Country United Kingdom 
Sector Academic/University 
PI Contribution Research collaboration to deliver strategic research exemplar studies using the ECHILD database. Research into the relative importance of early health, skills and disadvantage in predicting later educational attainment; the importance of health, skills and disadvantage changes over the lifecycle and whether early health continues to matter over and above later health and attainment. Research into the impact of the Covid-19 pandemic on the timing of repair surgery for children born with an oral cleft in England, and implications of delays for educational outcomes.
Collaborator Contribution Research collaboration to deliver strategic research exemplar studies using the ECHILD database.
Impact Preprint publications, with manuscripts currently being prepared.
Start Year 2020
 
Description ECHILD partnership 
Organisation Department for Education
Country United Kingdom 
Sector Public 
PI Contribution This is a four-way partnership and I lead the academic component. We also collaborate with LSHTM and Institute of Fiscal Studies
Collaborator Contribution As for NHS Digital partnership
Impact As for NHS Digital partnership
Start Year 2019
 
Description ECHILD partnership 
Organisation NHS Digital
Country United Kingdom 
Sector Public 
PI Contribution This is a four-way partnership and I lead the academic component. We also collaborate with LSHTM and Institute of Fiscal Studies
Collaborator Contribution As for NHS Digital partnership
Impact As for NHS Digital partnership
Start Year 2019
 
Description ECHILD partnership 
Organisation Office for National Statistics
Country United Kingdom 
Sector Private 
PI Contribution This is a four-way partnership and I lead the academic component. We also collaborate with LSHTM and Institute of Fiscal Studies
Collaborator Contribution As for NHS Digital partnership
Impact As for NHS Digital partnership
Start Year 2019
 
Description ECHILD knowledge sharing and engagement sessions 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Seminars, Network Symposiums and user group engagements with researchers, analysts and policy makers regarding the ECHILD database and project research. 991 individuals engaged through 20 events over the duration of the project.
Year(s) Of Engagement Activity 2020,2021,2022
 
Description ECHILD small group patient and public involvement and engagement sessions 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact 11 small group engagements with children and young people and parents and carers, engaging 127 individuals to understand different views on the use of linked health, education and social care data for research and steer for ECHILD project research plans and results.
Year(s) Of Engagement Activity 2020,2021,2022
URL https://www.ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-dep...
 
Description Stakeholder meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Organisations representing children's interests are invited to question the Government and Research partners of ECHILD. The aim is to give their perspectives on how the database should be used and to contribute suggestions for research priorities.
Year(s) Of Engagement Activity 2021