1. 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.

2. 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)

3. 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.

4. 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

5. 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

6. 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 ValidateTrace & Geo-code

7. 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

8. 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

9. 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

10. 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

11. 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?

12. SAIL : Secure Anonymised Information Linkage HIRU : Health Information Research Unit Thanks for listening Questions? m.l.heaven@swansea.ac.uk http://www.swansea.ac.uk/medicine/ils/healthinformationresearchunit/