Linking health and education data for research to improve outcomes for children in England - Supplement
Lead Research Organisation:
University College London
Department Name: Institute of Child Health
Abstract
ECHILD (Education and Child Health Insights from Linked Data) is a research database that joins together existing health, education and social care information for all children in England. This linked data is helping us to better understand how education affects children's health, and how health affects children's education. ECHILD has been recognised by the Office for Statistics Regulation as an example of good practice in increasing the visibility of children and young people by linking data to create a more rounded picture of their lives. The data has already been used to measure disruption to hospital services during the pandemic for different groups of children, based on health or social care needs, and to evaluate the risk of poor educational outcomes and the need for Special Educational Needs provisions at ages 7 and 11 depending on gestational age at birth.
The aim of the ECHILD partnership was and is to make the ECHILD database available to the wider research community. NHS Digital were funded to help find a governance solution to enable onward sharing of ECHILD beyond the UCL study team. Consensus amongst the ECHILD Task & Finish Group (including membership from NHS Digital, DfE, DHSC, ONS and UCL) is that the only viable route to opening up the data for wider research use in the short-term is for UCL to sublicense their existing ECHILD data.
Proposed Research
The aim of this proposal is to open up ECHILD for wider research use through a sublicensing agreement between UCL and NHS Digital. This will allow the wider research community and government analysts to use the data via the ONS SRS to undertake research in any area that provides significant benefits to health or education. Implementation of wider use via a sublicensing agreement will also enable road-testing of an end-to-end service of data flows, preparation, updating and extraction procedures, by UCL working in partnership with ONS SRS and the data custodians.
Objectives:
1. Obtain approval from ethics committees and data owners for ECHILD to become a Research Database that can be opened up for wider research use.
2. Create an expanded ECHILD website to promote transparency, with appropriate privacy notices, a register of approved research applications, and access to outputs.
3. Maintain the ECHILD User Guide and provide support to prospective applicants, including advice on carrying out further linkages (e.g. to rare disease cohorts, or wider health/education data)
4. Support applicants to use the data, e.g. by making code publicly available.
5. Establish processes for reviewing and approving (as license holders) project proposals submitted to the UK Statistics Authority Research Accreditation Panel.
6. Work with ONS to manage data transfers between data holders and ONS SRS and refreshes of data; check new linkages (and re-linkages) and organise data into a form that is useable by a wider research group.
7. Manage approvals for additional datasets for extended ECHILD (e.g. Maternity Services Data, Community Services Data, and Mental Health data).
8. Strategic development of ECHILD to allow for future enhancement as new resources become available / as governance allows.
The aim of the ECHILD partnership was and is to make the ECHILD database available to the wider research community. NHS Digital were funded to help find a governance solution to enable onward sharing of ECHILD beyond the UCL study team. Consensus amongst the ECHILD Task & Finish Group (including membership from NHS Digital, DfE, DHSC, ONS and UCL) is that the only viable route to opening up the data for wider research use in the short-term is for UCL to sublicense their existing ECHILD data.
Proposed Research
The aim of this proposal is to open up ECHILD for wider research use through a sublicensing agreement between UCL and NHS Digital. This will allow the wider research community and government analysts to use the data via the ONS SRS to undertake research in any area that provides significant benefits to health or education. Implementation of wider use via a sublicensing agreement will also enable road-testing of an end-to-end service of data flows, preparation, updating and extraction procedures, by UCL working in partnership with ONS SRS and the data custodians.
Objectives:
1. Obtain approval from ethics committees and data owners for ECHILD to become a Research Database that can be opened up for wider research use.
2. Create an expanded ECHILD website to promote transparency, with appropriate privacy notices, a register of approved research applications, and access to outputs.
3. Maintain the ECHILD User Guide and provide support to prospective applicants, including advice on carrying out further linkages (e.g. to rare disease cohorts, or wider health/education data)
4. Support applicants to use the data, e.g. by making code publicly available.
5. Establish processes for reviewing and approving (as license holders) project proposals submitted to the UK Statistics Authority Research Accreditation Panel.
6. Work with ONS to manage data transfers between data holders and ONS SRS and refreshes of data; check new linkages (and re-linkages) and organise data into a form that is useable by a wider research group.
7. Manage approvals for additional datasets for extended ECHILD (e.g. Maternity Services Data, Community Services Data, and Mental Health data).
8. Strategic development of ECHILD to allow for future enhancement as new resources become available / as governance allows.
Organisations
Publications
Blake HA
(2023)
Linkage of multiple electronic health record datasets using a 'spine linkage' approach compared with all 'pairwise linkages'.
in International journal of epidemiology
Etoori D
(2022)
Reductions in hospital care among clinically vulnerable children aged 0-4 years during the COVID-19 pandemic.
in Archives of disease in childhood
Gimeno L
(2023)
Trends in survival of children with severe congenital heart defects by gestational age at birth: A population-based study using administrative hospital data for England.
in Paediatric and perinatal epidemiology
Harron K
(2023)
Linking data to build a bigger picture of paediatric referral pathways
in Archives of Disease in Childhood
Harron K
(2022)
Data linkage in medical research.
in BMJ medicine
Libuy N
(2023)
Gestational age at birth, chronic conditions and school outcomes: a population-based data linkage study of children born in England
in International Journal of Epidemiology
Mc Grath-Lone L
(2022)
Changes in adolescents' planned hospital care during the COVID-19 pandemic: analysis of linked administrative data.
in Archives of disease in childhood
Shaw RJ
(2022)
Biases arising from linked administrative data for epidemiological research: a conceptual framework from registration to analyses.
in European journal of epidemiology
Description | ADR England Community Catalyst: Children at risk of poor outcomes |
Amount | £759,592 (GBP) |
Funding ID | ES/Y010566/1 |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 01/2024 |
End | 12/2025 |
Description | Children Affected by Domestic Abuse Evaluation |
Amount | £852,895 (GBP) |
Organisation | Home Office |
Sector | Public |
Country | United Kingdom |
Start | 08/2022 |
End | 03/2025 |
Description | Enhancement of ECHILD with a mother-child and Unique Property Reference number link |
Amount | £271,850 (GBP) |
Funding ID | ES/X000427/1 |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 08/2022 |
End | 01/2025 |
Description | Improving transparency of processes for accessing health data for research purposes |
Amount | £15,000 (GBP) |
Organisation | Health Data Research UK |
Sector | Private |
Country | United Kingdom |
Start | 11/2023 |
End | 03/2024 |
Description | Linking health and education data for research to improve outcomes for children in England - Supplement 2 |
Amount | £399,845 (GBP) |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 01/2024 |
End | 12/2025 |
Title | ECHILD (Education and Child Health Insights from Linked Data) |
Description | ECHILD brings together linked administrative data from health, social care and education on 20 million children born since 1984 in England. |
Type Of Material | Database/Collection of data |
Year Produced | 2024 |
Provided To Others? | Yes |
Impact | Numerous outputs, publications and public engagement activities which are detailed at www.ucl.ac.uk/child-health/echild |
URL | http://www.ucl.ac.uk/child-health/echild |
Description | ADRUK Reception for ADR UK Ambassadors |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | ADRUK Reception for ADR UK Ambassadors |
Year(s) Of Engagement Activity | 2024 |
Description | Invited presentation at RSS Conference (Harrogate) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Session on Measuring children's wellbeing before and after COVID-19. |
Year(s) Of Engagement Activity | 2023 |
Description | PEDRI video |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | Video aimed at the general public to explain how data is used in research for children and families |
Year(s) Of Engagement Activity | 2024 |
URL | http://www.hdruk.ac.uk/about-us/involving-and-engaging-patients-and-the-public/get-involved/your-dat... |
Description | Pre-conference workshop at the International Population Data Linkage Network |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Pre-conference workshop at the International Population Data Linkage Network 2022 |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation at the International Population Data Linkage Network 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Presentation at the IPDLN conference 2022 |
Year(s) Of Engagement Activity | 2022 |