SAIL. Rowena Bailey. Farr Institute, Swansea University

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1 SAIL Rowena Bailey Farr Institute, Swansea University

2 Overview What s so special about administrative data? What does SAIL-ing have to do with data? How SAIL works (the technical but important bit) Why is SAIL different? What Data we hold (and where it comes from) How to get access to the data Examples of SAIL projects

3 Routine/administrative data Public sector departments hold vast quantities of data Rich source of detailed information Collected consistently, over time, across populations Potential to influence future policy decisions based on evidence! - Understand differences in patients epidemiology - Evaluate effectiveness of new services/treatments Using routine data is more economical More representative than people usually excluded from research

4 What is SAIL? Established 2006 Core funding from NISCHR Developed by Swansea University and NHS Wales-wide research resource Improve health & well-being Health datasets for Welsh population Additional funding to create the Farr institute More data added (social care, education, non-health) Linking routinely collected data to keep the UK at the forefront of global medical research Swansea awarded UK Centre of Excellence in ehealth Research by the MRC

5 How SAIL works Secure Anonymised Information Linkage

6 Why is SAIL different? Voluntary participation from Data Providers Doesn t receive any identifiable data No organisation (except Data Provider) sees complete dataset Separation of demographic and clinical/event data at source Standard operating model is remote data access not data release All proposals scrutinised - independent Information Governance panel Access when all regulatory & governance approvals obtained Results scrutinised before release of findings/research outputs

7 Datasets in SAIL (incomplete coverage) Administrative Health: Population Inpatients Outpatients Emergency Department Child Health Database Wales Administrative Non-Health: Welsh Demographic Dataset Births Deaths Education Housing Social Services Specialty specific: Cancer Incidence Cancer Screening Congenital Anomalies Arthropathies Myocardial Infarction Diabetes General GP Data Laboratory systems Study specific Embedded trials and cohorts

8 Cancer research using SAIL Working with Welsh Cancer Intelligence & Surveillance Unit (WCISU) A number of projects currently underway; - Routes to diagnosis and treatment for lung cancer - Using GIS to map the travel routes and journey times for cancer patients in Wales Also developing a cancer research hub in collaboration with ABMU and WCISU Acquisition of Genomics data Palliative care register

9 Forestfach Fire 5000 tonnes waste rubber flock alight within disused industrial unit Did hospital admissions or GP contacts increase among affected residents? Met office provided isochrones for levels of exposure Houses within affected isochrones identified Loaded into SAIL encrypt addresses (RALFs) Use WDS to identify people living in affected RALFs Select random control group from unaffected households Link to GP data and PEDW Logistic regression to identify differences Results to be published soon!! Leon May, PHW Observatory

10 Housing & Health Study Carmarthenshire social housing improvements 204 million Investment 9,256 homes Between

11 Housing & Health Study Has regeneration improved physical & mental health of residents? Natural experiment to evaluate population health Cross-comparison cohort study Intervention group 9,256 homes Comparator groups; - 13,000 social houses nearby Region - 167,000 homes rest of Carmarthenshire Compare changes in admission, GP visits and prescriptions Cardio-Respiratory conditions, falls, burns, mortality, depression

12 Help us to help you How do you see SAIL supporting your work? - we want to collaborate with you! Knowledge sharing - Valuable insights from data providers - Clinical experience - SAIL user forum (bi-monthly) Promote and encourage its use - untapped potential - only just scratching the surface!

13 Thank you Rowena Bailey