Born in BradfordData Linkage

David BolusHead of Data Quality and Information

GovernanceNHS Bradford and Airedale

Introduction

Bradford study background Study aims Data Sources Primary Care data Data linkage Preliminary Primary Care data

10% 8% 6% 4% 2% 0% 2% 4% 6% 8% 10%

0 to 4

5 to 9

10 to 14

15 to 19

20 to 24

25 to 29

30 to 34

35 to 39

40 to 44

45 to 49

50 to 54

55 to 59

60 to 64

65 to 69

70 to 74

75 to 79

80 to 84

85 plus

Male Female England & Wales

0

1

2

3

4

5

6

7

8

9

10

1993-1995 1994-1996 1995-1997 1996-1998 1997-1999 1998-2000 1999-2001 2000-2002 2001-2003

Rate

per

100

0 liv

e bir

ths

Bradford England & Wales

Infant Mortality Rate, Bradford and England and Wales

0

2

4

6

8

10

12

14

1993-1997 1994-1998 1995-1999 1996-2000 1997-2001 1998-2002 1999-2003

Rate

per

100

0 liv

e bi

rths

Most deprived

2nd most deprived

3rd most deprived

2nd least deprived

Least deprived

Infant Mortality by Deprivation Quintile within Bradford1993-97 to 1999-03

Growing up in Bradford?

High infant mortality rates Low birth weight High levels of disability Impending diabetes epidemic Childhood obesity Rapidly changing society

Making a difference

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.

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

Born in Bradford Birth Cohort Platform Study

NS 1&2NEW GENERISenvironmental exposure and changes in a child’s’ DNA

NS4-ESCAPEEuropean study of cohorts for air

pollution

NS5-HIWATEDisinfection By

Products, exposure and birth weight

NS6-Gestational Diabetes - how

risk factors may vary between ethnic groups.

NS7-Investigation of

post natal growth between ethnic groups

NS13-Exploring the meaning of somatic symptoms during pregnancy and their

relationship to emotional distress

NS14-A study of ethnic differences in intrauterine development of renal

morphometry

NS17-BiB ‘1000’ - Started recruitment August 2008Development and evaluation of interventions for the prevention of childhood obesity in a multi -ethnic population: the Born in

Bradford NHS Research Programme – 5 year project

NS15-BiB Infection and Allergy Study – to start in March 2009To assess the ‘hygiene hypothesis’ that early life infections determine later immune related diseases, and in particular to

assess the influence of age at infection with common viruses on immune function – 5 year project

NS8-Comparison of

adipostiybetween

Pakistani and White babies

NS10-Physical activity in pregnancy

NS11-Relationship

between Vit D and Gestational

Diabetes

Summary of Born in Bradford Research Activity-May 2008

NS16-BradICS : Started Sept 2008Infant care and SIDS prevention in a bi-

ethnic population

Born in Bradford Birth Cohort Platform Study – Nested Studies

NEW GENERISenvironmental exposure and changes in a child’s’ DNA

ESCAPEEuropean study of

cohorts for air pollution

HIWATEDisinfection By

Products, exposure and birth

weight

Gestational Diabetes - how risk

factors may vary between ethnic

groups.

-Investigation of post natal growth between ethnic

groups

Exploring the meaning of somatic symptoms during pregnancy and their

relationship to emotional distress

A study of ethnic differences in intrauterine development of renal

morphometry

BiB 1000Development and evaluation of interventions for the prevention of childhood

obesity in a multi-ethnic population: the Born in Bradford NHS Research Programme – 5 year project

Comparison of adipostiy

between Pakistani and White babies

Physical activity in pregnancy

Relationship between Vit D and

Gestational Diabetes

Summary of Born in Bradford Research Activity-March 2011

BradICSInfant care and SIDS prevention in a bi-

ethnic population

BiB Infection and Allergy Study To assess the ‘hygiene hypothesis’ - early life infections determine later

immune related diseases, is this influenced by age at infection with common viruses on immune function – 5 year project

MeDALL Mechanisms of the Development of Allergy. Investigation of the genetic

predisposition and biomarkers of allergic response and identification of targets for therapy.

Establishing congenital anomalies ascertainment system for BiB

Use of Vit D supplements in pregnant women in Bradford: what are the variables that affect their use?

DNA extraction and examination of adiposity and glucose variants in relation to maternal,

perinatal and infant outcomes

The effect of maternal iron status and intake during pregnancy on cardiovascular

disease risk in the offspring

Emotional well-being in motherhood: Validity and reliability of two questions

when screening for postnatal depression.

A pilot survey of deoxynivalenol exposure from pregnant women within the Born in

Bradford cohort.

Intake of Potential Dietary Carcinogens in Pregnant Women

Bradford Infant Care Study (BradICS). A qualitative study in understanding infant care and unexpected infant death in an urban multi-cultural UK

population

The effect of maternal iron status and intake during pregnancy on birth

outcomes and cardiovascular disease risk in the offspring

The theory of planned behaviour and breastfeeding amongst White British and South Asian mums: does the question-behaviour effect make a

difference.

Prenatal Exposure to Chlorination Disinfection By-Products and Fetal Growth in the Born-in-Bradford cohort

Quantitative descriptive analysis of data on stillborn babies and perinatal deaths in the Born in Bradford cohort

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

Data Sources

Maternity System Registration and Study Questionnaires Nested Study data Sample Collection - BioBank Primary Health Care Data

Future Source... Education

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

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

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

Study Identifiers

Mapping to existing sources Study ID Patient Identifiers

NHS Number Hospital / Maternity system identifier

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)

Study Linkage

NHS number

Study ID

Study ID

BiB - Mother’s Documents eClipse 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

BiB Warehouse

Under Construction

Research Platform Validation Linkage Interrogation

Warehouse Schema

BIB DatabaseEclipse

Database Systm One SCR Other Databases

Staging Area

Staging Table

Staging Table

Staging Table

Staging Table

Core

Load Control

Data Audit Load Exceptions

Reports Interfaces

Viewing area

Nested Studies

Images

Core

Biobank

ExclusionsContacts

Data Extracts

Fact tables

Security

External Databases BIB Databases

Validating and

auditing area

BIB DatabaseEclipse

Database Systm One SCR Other Databases

Staging Area

Staging Table

Staging Table

Staging Table

Staging Table

Core

Load Control

Data Audit Load Exceptions

Reports Interfaces

Viewing area

Nested Studies

Images

Core

Biobank

ExclusionsContacts

Data Extracts

Fact tables

Security

External Databases BIB Databases

Validating and

auditing area

Data Warehouse

Loading, Cleansing and validating Data Sources

Eclipse Maternity System Teleform electronic questionnaires Paper based questionnaires

Future SystmOne Linkage

Primary CareData Outputs

TPP SystmOne Central Reporting

Primary care cohort reporting

Engagement with Primary Care Feedback Research strands and nested studies

Proportion of BiB children within Bradford practices

0.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

GP Practice

Pre

vale

nce

per

100

ch

ild

ren

Prevalence BIB babies per 100 Practice list prevalence Born 1/2/2007 > 31/3/2011 Per 100 Average prevalence BIB children

Eczema patients in the BiB cohort by practice

Coding of BIB children with Eczema in practice between 01/02/2007 > 31/03/2011

0.00

10.00

20.00

30.00

40.00

50.00

60.00

70.00

80.00

90.00

100.00

110.00

GP Practice

Prev

alen

ce p

er 1

00 c

hild

ren

Prevalence of BIB children WITH a code of Eczema per 100 Average Prevalence BIB children with a code of Eczema per 100

Number of BiB children with congenital abnormalities per practice

Prevalence of BIB Children with ONE or MORE Congenital Abnormalities

0.00

0.02

0.04

0.06

0.08

0.10

0.12

0.14

0.16

0.18

GP Practice

Pre

vale

nce

Rat

e p

er 1

00

child

ren

Prevalence rate of BIB children with ONE or MORE Congenital Abnormalities

Average Prevalence rate BIB children with a code of Congenital Abnormalities

Asthma and Wheeze all BiB children

Prevalence of Asthma and Wheeze by Read Code Diagnosis

0.001.002.003.004.005.006.007.008.009.00

10.00

Asthma Wheeze Asthma orWheeze

Asthma ANDWheeze

Pre

vale

nce

per

100

ch

ildre

n

Asthma prescribing all BiB children

Prevalence of Asthma, Wheeze and Inhalor prescribing

0.00

1.00

2.00

3.00

4.00

5.00

6.00

7.00

8.00

Wheeze AND ABronchodilator (Repeat or

Acute Rx)

Wheeze AND ACorticosteroid (Repeat or

Acute Rx)

Wheeze AND A Cromoglicate(Repeat or Acute Rx)

Asthma AND ABronchodilator (Repeat or

Acute Rx)

Asthma AND A Corticosteroid(Repeat or Acute Rx)

Asthma AND A Cromoglicate(Repeat or Acute Rx)

Prev

alen

ce p

er 1

00 c

hild

ren

Consultation Rates of BiB children

Appointments patient count rate in General Practice

0.000.100.20

0.300.400.500.600.70

0.800.901.00

2007 2008 2009 2010 2011 > 31/3

Year

Rat

e p

er 1

000

chil

dre

n

Total Patient Count - Rate Total BIB Children Patient Count - Rate

Consultation Rates of BiB children

Appointments event count rate in General Practice

0.00

0.50

1.00

1.50

2.00

2.50

3.00

3.50

4.00

2007 2008 2009 2010 2011 > 31/3

Year

Rat

e p

er 1

000

chil

dre

n

Total BiB and Non BIB Event Count - Rate Total BIB Event Count - Rate

Challenges

Work in Progress Multi source multi format multi

quality Changing environment

Organisations Information boundaries Technology and systems

Successes

Engagement Primary Care involvement Biobank Data Quality improvement Research Platform

Questions ?