Data Swansea University Medical School. Dr Richard Fry Miss Angharad Walters Dr Dora Pouliou

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1 Data Swansea University Medical School Dr Richard Fry Miss Angharad Walters Dr Dora Pouliou

2 What is the SAIL Databank Total population data resource covering health and non health care related data. Monthly/Quarterly feeds from different sources across NHS, government, local authorities and national organisations etc (usually related to citizens of Wales). Over 19 billion records for > 5 millions people going back c.20 years. Focus on providing data for research, over 200m, 250+ projects, 500+ users.

3 How does the SAIL Databank operate? Public benefit & privacy risk assessed by independent panel incl. 30% citizens. Researchers only access the data they need, for as long as they need it. User training and clear user agreements. No raw data leaves but access from a researcher s desktop globally. All data pseudo-anonymised before access granted. Compliant with UK Data Protection regulations and Information Commissioners Office best practice. ISO27001 and governmentally accredited systems

4 Some of the Farr Institutes International Partnerships

5 Data Linkage: an essential tool for efficient observational and interventional research and service delivery Person level linkage is essential to make the most of routine data Datasets from different origins are linked Environment, Health, Admin Reliable data linkage needs consistent personal identifiers on which to link The linking of data allows for the evaluation of service outcomes and achieving best clinical practice Large scale infrastructure & management are needed to utilise these data efficiently

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9 100 ways of using data to make lives better

10 100 ways case studies Helping to Make Prudent Healthcare Happen Prudent Healthcare Principles: Healthcare should fit the needs and circumstances of the citizen. Healthcare should actively avoid waste and harm. Healthcare that brings little or no benefit should be abandoned. Healthcare must make the best possible use of the limited financial resources available.

11 100 ways case studies Evaluating the work of the Emergency Medical Retrieval and Transfer Service (EMRTS Cymru) Three year study following patients from the time of incident, throughout hospital care and to calculate post care health status

12 100 ways case studies Dementias Platform UK (DPUK) Data Portal The Data Portal is a pioneering platform that enables dementia researchers from around the world to access and examine data from over two million people, with an aim to drive research on potential new treatments that could halt or slow the condition.

13 100 ways case studies Does a change in alcohol availability have an effect on alcohol related harm? Farr researchers sought to investigate whether change in the availability of alcohol was associated with alcohol-related harm and whether the levels of harm were higher or lower in areas of social deprivation.

14 What is the ADRC-Wales? Part of the Administrative Data Research Network (ADRN) Provides the ability to facilitate publically beneficial academic research using a range of administrative data. Provides a safe, secure and transparent data linkage service for accredited, approved research using de-identified UK administrative data in secure settings.

15 Using the ADRC-Wales Complete a project proposal form and a researcher application form. Complete safe researcher accreditation training. The data are fully de-identified using TTPs. The data are kept secure, accessed within safe settings and statistical output is checked before release.

16 Available Administrative Data Education: National Pupil Database (NPD), Lifelong Learner Wales Record (LLWR), Higher Education Statistics Authority (HESA) Health: GP, Outpatient, Emergency services data, cancer screening, Social care (children and adults) Environment: Fuel poverty (HEED and NESTA and Trivallis) Work: Welsh Council for Voluntary Action All Wales Database (WCVA), Career Wales Surveys: National Survey for Wales (NSW); Skill and Employment Survey (SES) 2006 and 2012; Welsh Health Survey (WHS)

17 Projects: Examples of approved projects Feasibility study exploring the use of data linkage in the evaluation of the Supporting People programme - complete Evaluating the impact of Welsh government funded schemes designed to improve energy efficiency of low income households on health outcomes researcher conducting analysis An Investigation into the impact of disability on employment in Wales complete Family health events and pupil performance indicators in Wales researcher conducting analysis Assessing the feasibility of using administrative data to examine risk factors for domestic violence and child sexual exploitation in the Swansea area data negotiation Assessing the health and education impacts of Flying Start - data in ADRC secure environment Assessing the health impacts of adult s participation in sports in Wales - researcher conducting analysis Understanding the determinants of educational achievement and the association with health and well-being by age 14 in Wales data negotiation Extending the opportunities for the prevention of suicide data negotiation

18 ADRC Wales Support Team Dr. Dora Pouliou Public Health & Social Inequities Jo Davies Policing & Criminal Justice Katy Huxley Education, Skills & Employment Ian Thomas Social Policy & the Third Sector General queries:

19 Any Questions? Discussion: How can we leverage existing data resources to improve health and wellbeing in the UK?