SAIL : Secure Anonymised Information Linkage HIRU : Health Information Research Unit Secure...

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.



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)



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.



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



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



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)

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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



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



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

Clinically rich databases:Cancer Screening (multiple conditions)Congenital AnomaliesMyocardial InfarctionDiabetesArthropathiesEtc.

Individual level – non-NHS:Social Services Educational Attainment



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



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?



Thanks for listening

Questions?

[email protected]://www.swansea.ac.uk/medicine/ils/healthinformationresearchunit/

mailto:[email protected]

SAIL : Secure Anonymised Information Linkage HIRU : Health Information Research Unit Secure...

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