Secure Anonymised Information Linkage Databank (SAIL) - ESDS
Secure Anonymised Information Linkage Databank (SAIL) - ESDS
Secure Anonymised Information Linkage Databank (SAIL) - ESDS
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Understanding Wales:<br />
Opportunities for Secondary Data Analysis<br />
16/01/2012, Cardiff University.<br />
<strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong><br />
<strong>Linkage</strong> <strong>Databank</strong> (<strong>SAIL</strong>)<br />
Martin Heaven, Swansea University<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Health <strong>Information</strong> Research Unit (HIRU)<br />
Core funded by WG (NISCHR)<br />
plus project grants<br />
Part of the strategic<br />
infrastructure for research in UK<br />
OSCHR – E-Health<br />
Records Research Board<br />
Created the <strong>Secure</strong> <strong>Anonymised</strong><br />
<strong>Information</strong> <strong>Linkage</strong> (<strong>SAIL</strong>)<br />
system<br />
Also works to support research<br />
across UK (e.g. ALSPAC and MS<br />
Project)<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
The essence of HIRU’s work . .<br />
Linking anonymised data, at individual and<br />
ecological levels, across multiple datasets, drawn<br />
from operational systems in health services,<br />
national databases, clinical datasets and databases<br />
in social care, education, housing, etc.<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Steps in utilising health information for research<br />
1. Building trust, partnerships and collaboration<br />
2. Development of anonymisation and linkage<br />
techniques<br />
3. Quality assessment and appraisal of datasets<br />
4. Use of datasets to support research<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Building trust, partnerships and collaboration<br />
• The combination of split files, double encryption and step<br />
wise analysis ensures researchers never identify anybody<br />
• <strong>SAIL</strong> can only be used for defined purposes<br />
• <strong>Information</strong> Governance Review Panel membership:<br />
– BMA Ethics Advisor (also on ECC), NRES, Caldicott<br />
Guardian, NWIS, and lay members<br />
– No performance management analyses<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Split file anonymisation/Honest Broker<br />
Demographic<br />
data only<br />
Operational<br />
system<br />
Data Provider<br />
Validate<br />
Trace & Geo-code<br />
Construct ALF<br />
Anonymisation<br />
process<br />
Clinical / activity<br />
data<br />
NHS Wales Informatics<br />
Service<br />
Validated,<br />
anonymised<br />
data<br />
Recombine<br />
HIRU (Blue C)<br />
Other<br />
recombined<br />
data<br />
HIRU (Blue C)<br />
Encrypt and load<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
<strong>Anonymised</strong> <strong>Linkage</strong> Fields (ALFs)<br />
Primary ALF – (NHS Wales Informatics Service - NWIS)<br />
Encrypted NHS number<br />
Secondary ALF – (HIRU)<br />
Encrypted primary ALF (HIRU)<br />
No organisation holds keys to both ALFs<br />
Datasets stored independently<br />
Project specific views created<br />
Project specific encryption<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Research using housing location data<br />
• Creating RALFs for every residence in Wales<br />
– Grid locations held securely within HSW<br />
• Assign each ALF-E to a RALF-E,<br />
• Track movements of ALF-E between RALF-Es over time (never<br />
knowing who or where)<br />
– Conduct research:<br />
• Likelihood to walk and take exercise<br />
• Household exposures (e.g. air quality, heating, etc)<br />
• Model infection disease spreads through household contacts<br />
• Link survey data with environmental exposure and health<br />
outcomes<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Some datasets; individual and ecological<br />
Individual level - NHS:<br />
Population (NHSAR)<br />
Inpatients (PEDW)<br />
Births<br />
Deaths<br />
Outpatients<br />
A&E<br />
GP Data<br />
Laboratory systems<br />
Out of Hours Services<br />
Community Child Health Database<br />
NHS Direct Wales<br />
Radiology- Imaging<br />
Clinically rich databases:<br />
Cancer<br />
Screening (multiple conditions)<br />
Congenital Anomalies<br />
Myocardial Infarction<br />
Diabetes<br />
Arthropathies<br />
Etc.<br />
Individual level – non-NHS:<br />
Social Services<br />
Educational Attainment<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Projects using linked data<br />
• Dermatology Service Needs<br />
• Dementia and Care Homes<br />
• Obesity in GP data<br />
• EUROmediCAT - Diabetes Cohort<br />
• AS Cohort<br />
• Multiple Sclerosis<br />
• Retinopathy Screening<br />
• Moving House and Child Health<br />
• Epidemiology of Open Tibial Fractures<br />
• EUROmediCAT - diabetes<br />
• Environments for Healthy Living<br />
• Rare Neurological Disorders<br />
• COPD prevalence Phase 1 and 2<br />
• PPI risk factor for campylobacter<br />
• Cervical screening uptake by HPV<br />
vaccinated cohorts<br />
• Carmarthenshire Housing Regeneration<br />
Project<br />
• Diabetes in Children<br />
• Alcohol outlet density and population<br />
health<br />
• Mediguard - Cholesterol<br />
• GFL AHI Proof of Concept<br />
• Modelling Risk Pathways in CHD<br />
• Epi of orthopaedic care pathways<br />
• PRISM evaluation<br />
• Vasovasostomy and Prostate Cancer<br />
• Premature CVD risk factors<br />
• Bowel screening and healthcare utilisation<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Future linkage<br />
• Welsh Government Fellowships<br />
– Maximising the use of routinely collected data<br />
• Exploring the potential of existing data sets<br />
– Future surveys to include permission to link<br />
• Currently being tested.<br />
– Beyond 2011<br />
• Can data linkage help?<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
Thanks for listening<br />
Questions?<br />
m.l.heaven@swansea.ac.uk<br />
http://www.swansea.ac.uk/medicine/ils/healthinformationresearchunit/<br />
<strong>SAIL</strong> : <strong>Secure</strong> <strong>Anonymised</strong> <strong>Information</strong> <strong>Linkage</strong><br />
HIRU : Health <strong>Information</strong> Research Unit
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