UK Biobank IT Systems from Design to Delivery

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Steve Walker (CIO, UK Biobank) UK Biobank IT
Systems from Design to Delivery
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Contents

• Introduction
• About UK Biobank
• Objectives and Approach
• Timescales
• Systems Solutions and Standards
• Scope
• Requirements Definition
• Development Approach
• High Level Architectures
• HL7 and HTB

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Introduction

• My responsibilities include
• Information Systems Data Management
• To build the infrastructure that will become the
  UK Biobank data resource
• Programme Project Planning
• Complex interdependencies
• Green field project
• Recruitment Services
• How to ensure that 500,000 people want to and can
  participate in the project

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Approach Rationale
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Approach Participants

• Invite 500,000 people in age range 40-69 to
  participate
• Dedicated Assessment Centres throughout UK
• About 15 concurrently
• Explicit broad consent
• Detailed lifestyle and health questionnaire
• Physical Measurements
• Collection of blood and urine samples
• Follow Up
• Participants health for 20-30 years with
  information from multiple sources
• Medical records and biological samples
• Environmental information

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The Recruitment Funnel
Central GP

• UK Biobank Cohort
• Generalisable to
• UK Population
• aged 45-69.
• Cohort stratification criteria
• Age
• Gender
• Ethnic Minorities
• Other Minority Groups
• Socio-economic Status

Response Rate 30?
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Scientific Rationale - 1

• Largest prospective cohort project yet undertaken
• Combines robust epidemiological tools with the
  new biological technologies to
• Study the underlying mechanisms of disease
• Identify markers of disease and disease
  progression
• Identify genetic, environmental and/or lifestyle
  factorspredicting, pre-disposing or affecting
  disease onset or prognosis
• Allowing existing studies to be carried out with
  increased power and new questions to be asked

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Scientific Rationale - 2

• The project is large enough that sufficient
  incident cases of major diseases will occur in
  the population to yield informative data on
  nested subsets.
• The UK Biobank will be a resource for prospective
  studies with benefits of
• Accuracy of assessment of environmental exposures
  against retrospective studies
• Modification of environmental exposures after
  first presentation
• Psycho-social factors and mental health

Doll and Hills paper on their prospective study
on smoking and lung cancer was published 50
years ago BMJ 19542281451-55
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Organisation of the Project

• Funded for recruitment phase
• Registered charity and limited company
• Acting Chief Executive Dr Tim Peakman
• Core team of 18 people based at Manchester
  University
• Site of laboratories, storage and secure
  information centre
• 6 Regional Collaborating Centres involving 22
  universities

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Programme Milestones in 2005
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Systems Solutions Standards
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The UK Biobank Resource
UK Biobank Assessment Centre
UK Biobank Lab Archive
NHS Records
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Overall Systems Architecture
Recruitment Services
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Recruitment Services
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Assessment Centre Systems
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In Clinic Activity
60 90 minutes
Registration
Informed Consent
Self-Administered Touchscreen Questionnaire
Urine Sample
Physical Measurements
Interviewer Questionnaire
Blood Sample
Exit Interview
Integrated IT Systems
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Samples Collected from Each Participant
Spray-dried K2EDTA (plastic)
Acid citrate dextrose additives (ACD)
Clot activator and gel for serum separation
Plastic Conical Urinalysis
F/Ox

• 750 participants per day
• 3,750 tubes of blood
• 750 tubes of urine

• 14 million 1ml tubes
• 10 million 50ul tubes

4.5
10
10
10
10
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Glucose
40C Transport
RT Transport
40C Transport
RT Transport
Plasma, Buffy coat, DNA (FTA),RBCs, cell counts
Plasma, Buffy coat, PBLs,
Serum blood chemistry
Urine Metabolites Bioanalytes
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Current Status of IT Systems

• Initial core hardware platform installed - IBM
• Applications and database installed this week
  Oracle and Linux
• Process definition and data modelling on-going
  (BPMN standard)
• Thermo Nautilus LIMS being configured
• Assessment Centre
• Applications v1 delivered and v2 commissioned
• Hardware procurement almost complete - Dell
• Recruitment Services systems being specified

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Particular IT Challenges

• Everything is new there are no legacy systems
• Timescales
• Breadth of scope
• Scale
• Balancing
• Cost
• Usability
• Security not negotiable (EGC review next week)
• Not over-complicating . but it is complicated
  !
• We are not building an open multi-user system

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www.ukbiobank.ac.uk