SAIL : Secure Anonymised Information Linkage HIRU : Health Information Research Secure Anonymised Information Linkage Databank (SAIL) Martin Heaven, Swansea University Understanding Wales: Opportunities for Secondary Data Analysis 16/01/2012, Cardiff University.
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Understanding Wales: Opportunities for Secondary Data Analysis 16/01/2012, Cardiff University.
Understanding Wales: Opportunities for Secondary Data Analysis 16/01/2012, Cardiff University. Secure Anonymised Information Linkage Databank (SAIL) Martin Heaven, Swansea University . Health Information Research Unit (HIRU). Core funded by WG (NISCHR) plus project grants - PowerPoint PPT Presentation
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SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Secure Anonymised Information Linkage Databank (SAIL)
Martin Heaven, Swansea University
Understanding Wales: Opportunities for Secondary Data Analysis
16/01/2012, Cardiff University.
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Health Information Research Unit (HIRU)
Core funded by WG (NISCHR) plus project grants
Part of the strategic
infrastructure for research in UK
OSCHR – E-Health Records Research Board
Created the Secure Anonymised Information Linkage (SAIL) system
Also works to support research across UK (e.g. ALSPAC and MS Project)
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
The essence of HIRU’s work . .
Linking anonymised data, at individual and ecological levels, across multiple datasets, drawn from operational systems in health services, national databases, clinical datasets and databases in social care, education, housing, etc.
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Steps in utilising health information for research
1. Building trust, partnerships and collaboration2. Development of anonymisation and linkage
techniques3. Quality assessment and appraisal of datasets4. Use of datasets to support research
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Building trust, partnerships and collaboration
• The combination of split files, double encryption and step wise analysis ensures researchers never identify anybody
• SAIL can only be used for defined purposes• Information Governance Review Panel membership:
– BMA Ethics Advisor (also on ECC), NRES, Caldicott Guardian, NWIS, and lay members
– No performance management analyses
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Split file anonymisation/Honest Broker
Anonymisation process
HIRU (Blue C)
Demographic data only
Clinical / activity data
Recombine
Other recombined data
Validated, anonymised data
Encrypt and load
Operational system
NHS Wales Informatics Service
Data Provider
HIRU (Blue C)
Construct
ALF
Validate Trace &
Geo-code
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Anonymised Linkage Fields (ALFs)
Primary ALF – (NHS Wales Informatics Service - NWIS) Encrypted NHS number
No organisation holds keys to both ALFs Datasets stored independently
Project specific views created Project specific encryption
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Research using housing location data
• Creating RALFs for every residence in Wales– Grid locations held securely within HSW
• Assign each ALF-E to a RALF-E, • Track movements of ALF-E between RALF-Es over time (never
knowing who or where)– Conduct research:
• Likelihood to walk and take exercise• Household exposures (e.g. air quality, heating, etc)• Model infection disease spreads through household contacts• Link survey data with environmental exposure and health
outcomes
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Some datasets; individual and ecological
Individual level - NHS:Population (NHSAR)Inpatients (PEDW) BirthsDeathsOutpatientsA&EGP DataLaboratory systemsOut of Hours ServicesCommunity Child Health Database NHS Direct WalesRadiology- Imaging
• Dermatology Service Needs• Dementia and Care Homes• Obesity in GP data• EUROmediCAT - Diabetes Cohort• AS Cohort• Multiple Sclerosis• Retinopathy Screening• Moving House and Child Health• Epidemiology of Open Tibial Fractures• EUROmediCAT - diabetes• Environments for Healthy Living• Rare Neurological Disorders• COPD prevalence Phase 1 and 2• PPI risk factor for campylobacter
• Cervical screening uptake by HPV vaccinated cohorts
• Carmarthenshire Housing Regeneration Project
• Diabetes in Children• Alcohol outlet density and population
health• Mediguard - Cholesterol• GFL AHI Proof of Concept• Modelling Risk Pathways in CHD• Epi of orthopaedic care pathways• PRISM evaluation• Vasovasostomy and Prostate Cancer• Premature CVD risk factors• Bowel screening and healthcare utilisation
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Future linkage
• Welsh Government Fellowships – Maximising the use of routinely collected data
• Exploring the potential of existing data sets– Future surveys to include permission to link