Health Information Research Unit: WHAN update 10 th July 2008

1. Health Information Research Unit:WHAN update 10th July 2008 Professor Ronan Lyons Centre for Health Information, Research and Evaluation (CHIRAL) Institute of Life Science School of Medicine Swansea University

2. Health Information Research Unit (HIRU) - Intelligent analysis Health Information Research Laboratories (HIRL) - Information integration • Ambulatory Medical • and Health Care Centre • (ABMUNT) • Progressively improving health • and social care Research Informatics Relationships

3. Strategic context: UK research base • UK Office for Strategic Coordination of Health Research (OSCHR): sub-boards • Translational Medicine Research • Public Health Research • E-Health Research Board • Methodology Research • UK (England) Government Strategy for E-Health Research • £100M – Research Capability Programme (CfH)

4. Strategic context: Wales • The need for joined up Government to respond to major health challenges: • Poor health legacy – inequalities/social justice • Wanless reports • Designed for Life • One Wales • WORD – health research strategy • A dual track of improving both health and health and social services

5. Problem: most health improvement levers are not within health services • Organisational mismatch of skills and information • Skills in evaluating interventions are largely in academic and health sectors • Data on health determinants and exposures largely within the non health services sector • Data on health outcomes are largely within health sector

6. The essence of HIRU’s work . . • Linkingdata, 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, transport, etc.

7. Individual level - NHS: Population (NHSAR) Inpatients -PEDW (HES) Births Deaths Outpatients A&E GP Data Laboratory systems Out of Hours Services Child Health Database Wales NHS Direct Wales Radiology- Imaging Individual level – non-NHS: Social Services Educational Attainment Clinically rich databases: Cancer Screening (multiple conditions) Congenital Anomalies Myocardial Infarction Diabetes Stroke Arthropathies Etc. Ecological datasets (many are GIS): Census- small areas Ordnance Survey - Mastermap Transport Environmental Health Leisure Government departments and agencies Some datasets; individual and ecological

8. Problems • The information needs for policy development and service are very similar to research • Creating linkable (but not linked) datasets is only the beginning • Creating useful datasets from linked data requires considerable resource • Increasing access requires secure web based approaches

9. Success so far, the future…. Wales is currently way ahead of England…. • Phase 1 and 2 ILS funding (EU/WAG) and HIRU (WORD) • HIRU: major contribution to research platform success for Welsh universities • > £12M won • DECIPHer (UKCRC), FSBI (NPRI), WISERD (ESRC/HEFCW), INTEGRIS (EU), Patient cohorts (MRC), CONSTRUCT (HTA), MS Register (MSS) • HIRL – link with IHC/US universities • Practical research supporting improved health and care • ‘From byte to bedside and better health’ • Supporting cross cutting policy development and evaluation • Driving progressive quality improvement in the exemplar ABM Ambulatory Medical and Health Centre

10. All Wales SAIL - proposed HSW (psudonymisation and linkage) Data suppliers e.g. Trusts, HSW, Screening Services, 1o care, Government departments etc. All Wales SAIL Policy development and public health analysis: Unified Public Health System Academic Research Groups e.g. - DECIPHer - WISERD - NEW - CRCC – TRNs etc.

11. Anonymised Linkage Fields (ALFs) • ALF – encrypted NHS number – NHS • ALF-E: encrypted primary ALF – HIRU • No organisation holds keys to both ALFs • Facilitates access to non HIRU analysts

12. Health Information Research Unit Linking health and environmental data to support research Ronan A Lyons Institute of Life Science

13. Exemplar: The Built Environment and Health • What is the health impact of policies (interventions)? • Design of the built environment, planning and land use • Providing equitable access to services • Supporting physical activity through walking and cycling • Providing safe environments for pedestrians • Providing safe and exciting play areas for children • Evaluation of housing improvements • And many more….

14. Research using housing location data • Objective : Create 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

15. Access to playgrounds in Swansea

16. Network analysis: 264m vs 45m

17. Traffic calming, pedestrian safety and social justice

18. The future…….. HIRU has created a superb information platform for broad ranging interdisciplinary research, service evaluation and policy development DECIPHer, PHIRN, WISERD, NEW, etc, provide an enhanced academic interdisciplinary platform to evaluate complex interventions to improve health Development of an all-Wales SAIL with enhanced web access would provide an excellent platform for service evaluation and policy development • Thoughts?