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

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.