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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 ?