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An approach to linking education, social care and electronic health records for children and young people in South London: a linkage study of child and adolescent mental health service data
  1. Johnny M Downs1,2,
  2. Tamsin Ford3,
  3. Robert Stewart1,2,
  4. Sophie Epstein1,2,
  5. Hitesh Shetty2,
  6. Ryan Little3,
  7. Amelia Jewell2,
  8. Matthew Broadbent2,
  9. Jessica Deighton4,
  10. Tarek Mostafa5,
  11. Ruth Gilbert6,
  12. Matthew Hotopf1,2,
  13. Richard Hayes1,2
  1. 1 Institute of Psychiatry, Psychology and Neuroscience, Kings College London, London, UK
  2. 2 NIHR South London and Maudsley NHS Foundation Trust Biomedical Research Centre, London, UK
  3. 3 University of Exeter Medical School, Exeter, UK
  4. 4 Evidence Based Practice Unit, UCL and Anna Freud Centre, London, UK
  5. 5 UCL Institute of Education, University College London, London, UK
  6. 6 Administrative Data Research Centre for England, UCL Great Ormond Street Institute of Child Health, London, UK
  1. Correspondence to Dr Johnny M Downs; johnny.downs{at}kcl.ac.uk

Abstract

Objectives Creation of linked mental health, social and education records for research to support evidence-based practice for regional mental health services.

Setting The Clinical Record Interactive Search (CRIS) system was used to extract personal identifiers who accessed psychiatric services between September 2007 and August 2013.

Participants A clinical cohort of 35 509 children and young people (aged 4–17 years).

Design Multiple government and ethical committees approved the link of clinical mental health service data to Department for Education (DfE) data on education and social care services. Under robust governance protocols, fuzzy and deterministic approaches were used by the DfE to match personal identifiers (names, date of birth and postcode) from National Pupil Database (NPD) and CRIS data sources.

Outcome measures Risk factors for non-matching to NPD were identified, and the potential impact of non-match biases on International Statistical Classification of Diseases, 10th Revision (ICD-10) classifications of mental disorder, and persistent school absence (<80% attendance) were examined. Probability weighting and adjustment methods were explored as methods to mitigate the impact of non-match biases.

Results Governance challenges included developing a research protocol for data linkage, which met the legislative requirements for both National Health Service and DfE. From CRIS, 29 278 (82.5%) were matched to NPD school attendance records. Presenting to services in late adolescence (adjusted OR (aOR) 0.67, 95% CI 0.59 to 0.75) or outside of school census timeframes (aOR 0.15, 95% CI 0.14 to 0.17) reduced likelihood of matching. After adjustments for linkage error, ICD-10 mental disorder remained significantly associated with persistent school absence (aOR 1.13, 95% CI 1.07 to 1.22).

Conclusions The work described sets a precedent for education data being used for medical benefit in England. Linkage between health and education records offers a powerful tool for evaluating the impact of mental health on school function, but biases due to linkage error may produce misleading results. Collaborative research with data providers is needed to develop linkage methods that minimise potential biases in analyses of linked data.

  • health informatics
  • epidemiology
  • data linkage
  • school and education

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Patient consent for publication Not required.

  • MH and RH contributed equally.

  • Contributors The study was conceived by JMD, TF and MH. Data extraction was carried out by JMD with support from HS, MB, SE, RL and AJ. Data analysis was undertaken by JMD. Reporting of findings was led by JMD with support from RG, TM, SE, TF, JD and RH, supervised by RS and MH. All authors contributed to manuscript preparation and approved the final version.

  • Funding This work was supported by the Clinical Records Interactive Search (CRIS) system funded and developed by the National Institute for Health Research (NIHR) Mental Health Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London and a joint infrastructure grant from Guy’s and St Thomas’ Charity and the Maudsley Charity (grant number BRC-2011-10035). JD received support by a Medical Research Council (MRC) Clinical Research Training Fellowship (MR/L017105/1) and Psychiatry Research Trust Peggy Pollak Research Fellowship in Developmental Psychiatry. RDH was funded by an MRC Population Health Scientist Fellowship (grant number MR/J01219X/1). MH, RS, AJ, MB, RL and HS received salary support from the NIHR Mental Health Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. JD was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care North Thames at Bart’s Health NHS Trust (NIHR CLAHRC North Thames). RG and JD are members of the Policy Research Unit in the Health of Children, Young People and Families (CPRU), which is funded by the England Department of Health Policy Research Programme.

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Ethics approval The CRIS data resource received ethical approval as an anonymised data set for secondary analyses from Oxfordshire REC C (Ref: 08/H0606/71+5) and NHS Health Research Authority Confidentiality Advisory Group, reference: CAG 9-08(a)/2014.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The data accessed by CRIS remain within an NHS firewall and governance is provided by a patient-led oversight committee. Subject to these conditions, data access is encouraged and those interested should contact RS (robert.stewart@kcl.ac.uk), CRIS academic lead.

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