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

BMJ Open

Volumn 9, Issue 1, 2019, Pages

  Downs, Johnny M ^a,b   Ford, Tamsin ^c   Stewart, Robert ^a,b   Epstein, Sophie ^a,b   Shetty, Hitesh ^b   Little, Ryan ^c   Jewell, Amelia ^b   Broadbent, Matthew ^b   Deighton, Jessica ^d   Mostafa, Tarek ^e   Gilbert, Ruth ^f   Hotopf, Matthew ^a,b   Hayes, Richard ^a,b  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b King s College London   (United Kingdom)

^c UNIVERSITY OF EXETER MEDICAL SCHOOL   (United Kingdom)

^d ANNA FREUD CENTRE   (United Kingdom)

^e UNIVERSITY OF LONDON   (United Kingdom)

^f UNIVERSITY COLLEGE LONDON   (United Kingdom)

Author keywords

data linkage; epidemiology; health informatics; school and education

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CLINICAL PROTOCOL; COHORT ANALYSIS; EDUCATION; ELECTRONIC HEALTH RECORD; ENGLAND; EVIDENCE BASED PRACTICE; FEMALE; HUMAN; ICD-10; INFANT; MAJOR CLINICAL STUDY; MALE; MENTAL HEALTH SERVICE; RISK FACTOR; SCHOOL ATTENDANCE; SOCIAL CARE; FACTUAL DATABASE; INFORMATION PROCESSING; INFORMATION RETRIEVAL; MEDICAL INFORMATICS; NATIONAL HEALTH SERVICE; PRESCHOOL CHILD; PROCEDURES; SOCIAL WORK;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; DATABASES, FACTUAL; EDUCATION; ELECTRONIC HEALTH RECORDS; EVIDENCE-BASED PRACTICE; FEMALE; HUMANS; INFORMATION STORAGE AND RETRIEVAL; LONDON; MALE; MEDICAL INFORMATICS; MENTAL HEALTH SERVICES; RECORDS; SOCIAL WORK; STATE MEDICINE;

EID: 85060960162     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2018-024355     Document Type: Article

References (35)

1. Overy C, Reynolds LA, Tansey EM. History of the Avon Longitudinal Study of Parents and Children, C 1980-2000. Queen Mary: University of London, 2012.
2. Bonevski B, Randell M, Paul C, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 2014;14:42.
3. Kho ME, Duffett M, Willison DJ, et al. Written informed consent and selection bias in observational studies using medical records: systematic review. BMJ 2009;338:b866.
4. Langan SM, Benchimol EI, Guttmann A, et al. Setting the RECORD straight: developing a guideline for the REporting of studies Conducted using Observational Routinely collected Data. Clin Epidemiol 2013;5:29-31.
5. Wellcome Trust. Public health research data forum. enabling data linkage to maximise the value of public health research data: full report. 2015 https:// wellcome. ac. uk/ sites/ default/ files/ enabling-datalinkage-to-maximise-value-of-public-health-research-data-phrdfmar15. pdf (Accessed 22 Sept 2018).
6. Downs J, Gilbert R, Hayes RD, et al. Linking health and education data to plan and evaluate services for children. Arch Dis Child 2017;102:599-602.
7. Health Research Authority. Section 251 and the Confidentiality Advisory Group (CAG) Health Res. Auth. http://www. hra. nhs. uk/ about-the-hra/ our-committees/ section-251/ (Accessed 21 Sep 2018).
8. Lariscy JT. Differential record linkage by hispanic ethnicity and age in linked mortality studies: implications for the epidemiologic paradox. J Aging Health 2011;23:1263-84.
9. Bohensky M. Bias in data linkage studies. In: Harron K, Goldstein H, Dibben C, eds. Methodological developments in data linkage: John Wiley & Sons, Ltd, 2015:63-82.
10. Harron K, Goldstein H, Dibben C. Methodological developments in data linkage. Chichester, West Sussex, United Kingdom: Wiley-Blackwell, 2015.
11. Perera G, Broadbent M, Callard F, et al. Cohort profile of the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Case Register: current status and recent enhancement of an Electronic Mental Health Record-derived data resource. BMJ Open 2016;6:e008721.
12. Department for Education. National pupil database user guide. UK Government: Department for Education, 2015.
13. legislation. gov. uk. The Education (Individual Pupil Information) (Prescribed Persons) (England) Regulations 2009. http://www. legislation. gov. uk/ uksi/ 2009/ 1563/ contents/ made (Accessed 21 Sept 2018).
14. legislation. gov. uk. The Education (Individual Pupil Information) (Prescribed Persons) (England) (Amendment) Regulations. 2013 http://www. legislation. gov. uk/ uksi/ 2013/ 1193/ made (Accessed 21 Sept 2018).
15. Information Commissioner's Office. Guide to the General Data Protection Regulation. 2018 https:// ico. org. uk/ media/ fororganisations/ guide-to-the-general-data-protection-regulation-gdpr-1-0. pdf (accessed May 20, 2018).
16. Downs J, Hotopf M, Ford T, et al. Clinical predictors of antipsychotic use in children and adolescents with autism spectrum disorders: a historical open cohort study using electronic health records. Eur Child Adolesc Psychiatry 2016;25:649-58.
17. Downs JM, Lechler S, Dean H, et al. The Association Between Comorbid Autism Spectrum Disorders and Antipsychotic Treatment Failure in Early-Onset Psychosis: A Historical Cohort Study Using Electronic Health Records. J Clin Psychiatry 2017;78:e1233-41.
18. Rutter M. World Health Organization. Multiaxial classification of child and adolescent psychiatric disorders : the ICD-10 classification of mental and behavioural disorders in children and adolescents. Cambridge: Cambridge University Press, 1996.
19. Department for Education. London Schools and Pupils by Borough and Type of School, 2015. https:// data. london. gov. uk/ dataset/ schools-and-pupils-type-school-borough. (Accessed 22 May 2018).
20. The Information Governance Review. Information: To share or not to share? UK Government: Department of Health, 2013.
21. HMG Cabinet Office. Security policy framework. 2016 https:// www. gov. uk/ government/ publications/ security-policy-framework (Accessed 21 Sept 2018).
22. Millennium Cohort Study. Welcome to the Millennium Cohort Study-Centre for Longitudinal Studies. https://www. cls. ioe. ac. uk/ page. aspx? sitesectionid= 851 (Accessed 26 March 2018).
23. (SURE). King's College London-Service User Research Enterprise (SURE). https://www. kcl. ac. uk/ ioppn/ depts/ hspr/ research/ ciemh/ sure/ SURE. aspx (Accessed22 May 2018).
24. Bohensky MA, Jolley D, Sundararajan V, et al. Data linkage: a powerful research tool with potential problems. BMC Health Serv Res 2010;10:346.
25. Höfler M, Pfister H, Lieb R, et al. The use of weights to account for non-response and drop-out. Soc Psychiatry Psychiatr Epidemiol 2005;40:291-9.
26. Little RJ, Vartivarian S. On weighting the rates in non-response weights. Stat Med 2003;22:1589-99.
27. Health Research Authority. CAG Advice and HRA/SofS Approval Decisions Health Res. Auth. https://www. hra. nhs. uk/ planning-andimproving-research/ application-summaries/ confidentiality-advisorygroup-registers/ (Accessed 22 May 2018).
28. Department for Health. NHS Information Governance Toolkit. 2018 https://www. igt. hscic. gov. uk/ (Accessed 21 Sep 2018).
29. Hagger-Johnson G, Harron K, Goldstein H, et al. Probabilistic linkage to enhance deterministic algorithms and reduce data linkage errors in hospital administrative data. J Innov Health Inform 2017;24:234-46.
30. Gilbert R, Lafferty R, Hagger-Johnson G, et al. GUILD: GUidance for Information about Linking Data sets. J Public Health 2018;40:191-8.
31. Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why care. data ran into trouble. J Med Ethics 2015;41:404-9.
32. Davis KA, Sudlow CL, Hotopf M. Can mental health diagnoses in administrative data be used for research? A systematic review of the accuracy of routinely collected diagnoses. BMC Psychiatry 2016;16:263.
33. Hebbring SJ. The challenges, advantages and future of phenome-wide association studies. Immunology 2014;141:157-65.
34. Downs J, Dean H, Lechler S, et al. Negative Symptoms in Early-Onset Psychosis and Their Association With Antipsychotic Treatment Failure. Schizophr Bull 2018.
35. Administrative Data Research Network. Data Reuse for Research Purposes. Economic and Social Research Council 2017 https:// adrn. ac. uk/ media/ 174422/ adrn-034- data reus efor rese arch purposes- 02- 00- pub. pdf (accessed May 21, 2018).