Case study: First Regional Comprehensive Dataset of Emergency and Urgent Care (EUC): A research platform of routine ‘big data’ to inform research and service redesign. NIHR CLAHRC YH Theme: AAA

March 2015

Contact: [email protected] Background: The Avoidable Attendances and Admissions (AAA) theme are developing the first regional emergency and urgent care (EUC) database of patient level data which links from the point of entry (time of initial call) through to discharge from hospital in the region. This is a unique and comprehensive dataset which includes routine patient level data from all trusts in the region. This large undertaking has involved successful collaboration across the Yorkshire Ambulance Service (YAS) and fourteen acute hospital trusts in the region, as well as utilising the expertise of NHS Sheffield CCG. The database currently includes data on over 500,000 patient episodes and this is expected to expand to over 1.5 million by the end of data collection in September 2015. This database has the potential to make a significant contribution to both research and patient care in the EUC system, and adds to the research capacity infrastructure using real-world data. Currently the EUC system in England is under considerable strain to meet performance targets. But there is a lack of understanding regarding which patients are putting the greatest demand on this system. There is also a need to understand how to best treat patients with long term conditions, increasing age and complexity. This linked dataset will enable an analysis of demand in the EUC system, and explore variations in use, and how this differs with patient case-mix. For example, which patient groups use the ambulance services and why? It might also identify patient groups for more appropriate pathways of care. This work has involved facilitating the transfer of large datasets between the NHS and the University, and between some trusts. The project highlights how close cross sectorial working can facilitate sharing data towards a common goal of improved care for patients. Two PPI groups have provided feedback on the project regarding the release and processing of patient identifiable data from the NHS to the research team, which was crucial in ensuring the study obtained the necessary permissions from the Confidentiality Advisory Group (CAG). Ongoing consultation with the two groups is assisting with identifying research priorities and determining feasibility of alternative pathways of care. This study has the potential to make a significant contribution to knowledge in the area of EUC including:  Improving the understanding of patient case-mix presenting to the system in Y&H  Identifying current clinical pathways and outcomes of these patients.  Informing use of alternative pathways of care and the clinical outcomes and potential cost savings associated with these pathways.  Highlight potential issues with access to alternative, more appropriate patient care in the EUC system for patients from disadvantaged socio-economic backgrounds and also patients from ethnic minority groups.

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Providing the necessary data to target interventions at patients based on these important markers of health inequality.

Next steps: Stakeholder engagement: We intend to work with the AAA steering and PPI groups to determine priorities for interrogation of the data. Findings will be shared with commissioners, Better Care Fund Teams, and participating trusts. Work with the AHSN YH will ensure information sharing across the region to promote communication and implementation of findings from the data analysis. Once the data linkage between ambulance service and acute hospital data is completed successfully, we will undertake further discussions with the AHSN to examine feasibility of expanding the dataset to include primary care data through SystemOne. Cross theme working: We anticipate that we will work with the frail elderly and mental health themes to interpret data, and shape potential service developments. Research: The data will be used to identify priority areas for further research. Key questions and topics will be used to develop grant applications in line with national priorities for EUC services.

How CLAHRC supports this project: The NIHR CLAHRC YH has been pivotal in facilitating the development of the network of partners to establish this database through match funding. Particularly key has been the development of a partnership with YAS who are a regional wide provider of pre-hospital 999 and NHS 111 services. Close links and a matched funding partnership were agreed with YAS from the outset of the CLAHRC and co-production of the EUC database has been the result of this partnership. Specifically the CLAHRC matched funding agreement with YAS has allowed funding for governance agreements and information support to allow the collaboration to proceed with the research team at the University of Sheffield. Similarly, matched funding agreements between CLAHRC YH and seven acute trusts has formed the initial basis for ensuring the hospital data will be provided. Matched funding provides time for information staff within trusts to extract and transfer data to the research team. Participating trusts have also developed their capacity to provide routine data for research purposes. For example, The Yorkshire Ambulance Service (YAS) has utilised Information Staff to produce evidence reports around data it is collecting for the data linkage study related to key trust research priorities such as mental health.

Provided for i.e NIHR Annual Progress Report March 2015 The NIHR CLAHRC Yorkshire and Humber is a partnership between 31 organisations including NHS, Higher Education, Local Authorities, Charities, Industry and the Regional Innovation Hub. A full list is available on our website www.clahrcyh.nihr.ac.uk

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