Transcript CERIPH - WISERD

Understanding Wales:
Opportunities for Secondary Data Analysis
16/01/2012, Cardiff University.
Secure Anonymised Information
Linkage Databank (SAIL)
Martin Heaven, Swansea 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 collaboration
2. Development of anonymisation and linkage
techniques
3. Quality assessment and appraisal of datasets
4. 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
Construct ALF
Demographic
data only
Trace & Geo-code
Validate
Data Provider
Anonymisation
process
HIRU (Blue C)
NHS Wales Informatics
Service
Other
recombined
data
Validated,
anonymised
data
Recombine
Encrypt and load
Clinical / activity
data
Operational
system
HIRU (Blue C)
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Anonymised Linkage Fields (ALFs)
 Primary ALF – (NHS Wales Informatics Service - NWIS)
 Encrypted NHS number
 Secondary ALF – (HIRU)
 Encrypted primary ALF (HIRU)
 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)
Births
Deaths
Outpatients
A&E
GP Data
Laboratory systems
Out of Hours Services
Community Child Health Database
NHS Direct Wales
Radiology- Imaging
Clinically rich databases:
Cancer
Screening (multiple conditions)
Congenital Anomalies
Myocardial Infarction
Diabetes
Arthropathies
Etc.
Individual level – non-NHS:
Social Services
Educational Attainment
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Projects using linked data
•
•
•
•
•
•
•
•
•
•
•
•
•
•
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
• Currently being tested.
– Beyond 2011
• Can data linkage help?
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit
Thanks for listening
Questions?
[email protected]
http://www.swansea.ac.uk/medicine/ils/healthinformationresearchunit/
SAIL : Secure Anonymised Information Linkage
HIRU : Health Information Research Unit