1. Born in Bradford Data Linkage David Bolus Head of Data Quality and Information Governance NHS Bradford and Airedale

2. Introduction  Bradford study background  Study aims  Data Sources  Primary Care data  Data linkage  Preliminary Primary Care data

6. Infant Mortality Rate, Bradford and England and Wales

8. Infant Mortality by Deprivation Quintile within Bradford 1993-97 to 1999-03

9. Growing up in Bradford?  High infant mortality rates  Low birth weight  High levels of disability  Impending diabetes epidemic  Childhood obesity  Rapidly changing society

10. Making a difference

11. Research aims  To explore the association between specific risk factors and exposures in pregnancy and infancy with infant mortality.  To describe the differences in foetal growth and birth weight between ethnic groups and to investigate the causes of low birth weight in babies of South Asian origin  To explore the effect of chemical exposure (air/water/diet) during pregnancy on the intrauterine growth  To determine the incidence, causes and predictive factors for congenital abnormalities  To investigate the association between dietary exposure to chemicals with carcinogenic and immunotoxic properties with childhood cancer and immune disorders.

12. Future aims  To study the patterns and aetiology of childhood obesity in a multi-ethnic population and develop a tailored prevention intervention.  Improving maternity and child health and well-being through the development and implementation of research-calibre information systems  To describe social and ethnic differences in health status.  To describe the epidemiology of viral infections in childhood and study their relationship with later childhood immunity and illness  Intervention trials – Vit D, fish oil supplementation, public health interventions

15. Study Data  Demographic/socio-economic  Family history  Lifestyle factors – smoking/drugs/alcohol  Diet  Well being – GHQ 28  Social Capital  Clinical: antenatal and medical histories; drugs; BP; weight; U/S scans.  Blood: routine; GTT; insulin; DNA extraction

16. Data Sources  Maternity System  Registration and Study Questionnaires  Nested Study data  Sample Collection - BioBank  Primary Health Care Data  Future Source... Education

17. Primary Care Data Source  Integrated Primary, Child Health and Community System – TPP SystmOne  82 out of 83 General Practices  Data Quality Assurance and Improvement programme  Clinical pathway development

18. Primary Care Data Quality  SystmOne Record  Longitudinal Clinical Record  Detailed, Structured and Coded  Consultations  Investigations  Diagnosis  Treatment  Disease Management  Allergies and Sensitivities  Vaccination and immunisations  Child Health

19. Primary Care Data Linkage  Recording Study Id in TPP SystmOne  Read Coding  Existing coding option  9Q2.. – Patient in Local Study  New coding requirement  Y0a18 – Born in Bradford Study ID  Y0da4 – Patient withdrawn from BiB  Numeric Field  Study ID cross mapping

20. Study Identifiers  Mapping to existing sources  Study ID  Patient Identifiers  NHS Number  Hospital / Maternity system identifier

21. Study Identifiers  Unique BiB Study Identifiers  Mother – 1000 to 20000 and 40000  Pregnancy (mother 1000)  Child – 1000p1  Pregnancies (mother 12193)  Child – 12193p1(single birth)  Child – 12193p21(twins)  Child – 12193p22(twins)

22. Study Linkage NHS number Study ID BiB-Mother’s DocumentseClipse Maternity System Mother’s NHS number Study ID Baby’s NHS number SystmOne(Child Health)& Primary Care Baby’s NHS number Registration Form Questionnaire Mother’s NHS number Study ID

23. BiB Warehouse  Under Construction  Research Platform  Validation  Linkage  Interrogation

24. Warehouse Schema

25. Data Warehouse  Loading, Cleansing and validating  Data Sources  Eclipse Maternity System  Teleform electronic questionnaires  Paper based questionnaires  Future SystmOne Linkage

26. Primary Care Data Outputs  TPP SystmOne  Central Reporting  Primary care cohort reporting  Engagement with Primary Care  Feedback  Research strands and nested studies

27. Proportion of BiB children within Bradford practices

28. Eczema patients in the BiB cohort by practice

29. Number of BiB children with congenital abnormalities per practice

30. Asthma and Wheeze all BiB children

31. Asthma prescribing all BiB children

32. Consultation Rates of BiB children

34. Challenges  Work in Progress  Multi source multi format multi quality  Changing environment  Organisations  Information boundaries  Technology and systems

35. Successes  Engagement  Primary Care involvement  Biobank  Data Quality improvement  Research Platform

36. Questions ?