14  Access conditions

Researchers will have to demonstrate how their research will benefit the health and well-being of children and young people accessing health, education and social care services. More specifically, projects will have to fall under at least one of the agreed five research purposes described in Chapter 3. We do not have approval for non-UCL PhD students without a substantive contract at an applying institution to access ECHILD.

Researchers will be expected to:

1. State their use of ECHILD in any publication/presentation and acknowledge the ECHILD team in publications and reports, including the following acknowledgements/notes where possible: We would like to acknowledge the contribution of the wider ECHILD Database support and programme management.
2. Undertake appropriate Public and Patient Involvement and Engagement (PPIE) activities.
3. Refer to ONS guidance regarding pre-publication, publication and code file clearance.
4. Notify and provide details in writing of all publications to UCL 14 days in advance of publication.
5. Notify and provide draft publications to the Department for Education 14 days in advance of any publication.
6. Include the following data sharing and funding statements in publications as defined by NHS England, the Department for Education, the ONS and ECHILD Database funders:
   1. The ECHILD Database uses data from the Department for Education (DfE). The DfE does not accept responsibility for any inferences or conclusions derived by the authors.
   2. This work uses data provided by patients and collected by the National Health Service as part of their care and support. Source data can also be accessed by researchers by applying to NHS England.
   3. We are grateful to the Office for National Statistics (ONS) for providing the Trusted Research Environment for the ECHILD Database. ONS agrees that the figures and descriptions of results in the attached document may be published. This does not imply ONS’ acceptance of the validity of the methods used to obtain these figures, or of any analysis of the results.
   4. The views in this publication do not necessarily reflect the views of UCL.
7. Report how data quality issues were addressed.
8. Share their code/script for data processing and analysis.
9. Prepare and send an annual report to the ECHILD team on the benefits of the research undertaken.

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Blackburn, R. et al. (2022) “COVID-19-related school closures and patterns of hospital admissions with stress-related presentations in secondary school-aged adolescents: Weekly time series,” Br J Psychiatr, 221(5), pp. 655–657.

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CSCDUG (2023) “The children’s social care data user group (CSCDUG).” Available at: https://cscdug.co.uk/.

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Department for Education (2023c) “Individualised learner record (ILR) technical documents, guidance and requirements.” Available at: https://guidance.submit-learner-data.service.gov.uk/.

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Department for Education (2024a) “Alternative provision census.” Available at: https://www.gov.uk/guidance/alternative-provision-ap-census.

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Department for Education (2024d) “Complete the school census.” Available at: https://www.gov.uk/guidance/complete-the-school-census.

Department for Education (2024e) “Data collection and censuses for schools.” Available at: https://www.gov.uk/education/data-collection-and-censuses-for-schools#guidance_and_regulation.

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Department for Education (2024i) “Statistics: Looked-after children.” Available at: https://www.gov.uk/government/collections/statistics-looked-after-children.

ECHILD (2023) “The ECHILD project.” Available at: https://www.echild.ac.uk.

Emmott, E.H., Jay, M.A. and Woodman, J. (2019) “Cohort profile: Children in need census (CIN) records of children referred for social care support in england,” BMJ Open, 9(2), p. e023771.

Etoori, D. et al. (2022) “Reductions in hospital care among clinically vulnerable children aged 0–4 years during the COVID-19 pandemic,” Arch Dis Child, 107, p. e29.

Gilbert, R. et al. (2017) “GUILD: GUidance for Information about Linking Data sets,” J Pub Health, 40(1), pp. 191–198.

Green, F. et al. (2017) “Who chooses private schooling in britain and why?” Available at: https://www.llakes.ac.uk/wp-content/uploads/2021/03/RP-62.-Green-Anders-Henderson-Henseke.pdf.

Harron, K. et al. (2016) “Linking data for mothers and babies in de-identified electronic health data,” PLoS One, 11(10), p. e0164667.

Harron, K. et al. (2017) “A guide to evaluating linkage quality for the analysis of linked data,” Int J Epidemiol, 46, pp. 1699–1710.

Health Data Research (2023a) “Innovation gateway: Hospital episode statistics accident and emergency (HES a&e).” Available at: https://web.www.healthdatagateway.org/dataset/101a7d68-1675-4b47-bfac-dde7b7b57877.

Health Data Research (2023b) “Innovation gateway: Hospital episode statistics admitted patient care (HES APC).” Available at: https://web.www.healthdatagateway.org/dataset/6599230a-df54-4615-937c-d724d239491f.

Health Data Research (2023c) “Innovation gateway: Hospital episode statistics critical care (HES CC).” Available at: https://web.www.healthdatagateway.org/dataset/d0eeba22-bc3f-4c40-be69-a99f916897a2.

Health Data Research (2023d) “Innovation gateway: Hospital episode statistics outpatients.” Available at: https://web.www.healthdatagateway.org/dataset/d4362d41-0838-4f41-bba3-c3268312c444.

Health Data Research (2023e) “Innovation gateway: Maternity services data set (MSDS).” Available at: https://web.www.healthdatagateway.org/dataset/0681a1e9-3778-4f43-88b3-6540515404b6.

Herbert, A. et al. (2017) “Data resource profile: Hospital episode statistics admitted patient care,” Int J Epidemiol, 46(4), pp. 1093–1093i.

Jay, M.A., Mc Grath-Lone, L. and Gilbert, R. (2019) “Data resource: The national pupil database (NPD),” Int J Pop Data Sci, 4(1), p. 08.

Libuy, N. et al. (2021) “Linking education and hospital data in england: Linkage process and quality,” Int J Pop Data Sci, 6(1), p. 13.

Libuy, N. et al. (2022) “Gestational age at birth, chronic conditions and school outcomes: A population-based data linkage study of children born in england,” Int J Epidemiol, 52(1), pp. 132–143.

Mc Grath-Lone, L., Dearden, L., et al. (2016) “Changes in first entry to out-of-home care from 1992 to 2012 among children in england,” Child Abuse & Neglect, 51, pp. 163–171.

Mc Grath-Lone, L., Harron, K., et al. (2016) “Data resource profile: Children looked after return (CLA),” Int J Epidemiol, 45(3), pp. 716–717f.

Mc Grath-Lone, L., Libuy, N., Harron, K., et al. (2021) “Data resource profile: The education and child health insights from linked data (ECHILD) database,” Int J Epidemiol, 51(1), pp. 17–17f.

Mc Grath-Lone, L., Libuy, N., Etoori, D., et al. (2021) “Ethnic bias in data linkage,” Lancet Digital Health, 3(6), p. e339.

Mc Grath-Lone, L., Etoori, D., et al. (2022) “Changes in adolescents’ planned hospital care during the COVID-19 pandemic: Analysis of linked administrative data,” Arch Dis Chil, 107(10), p. e29.

Mc Grath-Lone, L., Jay, M.A., et al. (2022) “What makes administrative data ‘research-ready’? A systematic review and thematic analysis of published literature,” Int J Pop Data Sci, 7(1), p. 1718.

Morris, H., Lanati, S. and Gilbert, R. (2018) “Challenges of administrative data linkages: Experiences of administrative data research centre for england (ADRC-E) researchers,” Int J Pop Data Sci, 3(2), p. 097.

Nguyen, V.G. et al. (2022) “SEN support from the start of school and its impact on unplanned hospital utilisation in children with cleft lip and palate: A demonstration target trial emulation protocol using ECHILD.” Available at: https://www.medrxiv.org/content/10.1101/2022.04.01.22273280v1.

NHS England (2023a) “About the maternity services data set (MSDS).” Available at: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/maternity-services-data-set/about-the-maternity-services-data-set.

NHS England (2023b) “Birth notification process.” Available at: https://digital.nhs.uk/services/national-care-records-service/birth-notification-process.

NHS England (2023c) “ECDS guidance and documents.” Available at: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/emergency-care-data-set-ecds/ecds-guidance.

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