Introducing the care.data programme

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1 Introducing the care.data programme Dr. Geraint Lewis Chief Data Officer July 2013 Building choice of high quality support for commissioners 1

2 care.data: a core programme of ISCG All parts of the English health and care system support the modernisation of care through the better use of data and technology The care.data programme will establish a modern data service for health and social care in England The role of the ISCG is to commission services within an agreed strategic framework; and then to monitor delivery against set objectives

3 The care.data programme builds on the strengths of the Hospital Episodes Statistics (HES) service HES contains information about the entire population, spanning every provider. It has recorded every inpatient admission since 1989, every outpatient attendance since 2003, and every A&E visit since 2007 HES contains tens of millions of these A Theograph showing one person s hospital interactions over time, spanning all providers HES has led to tens of thousands of audits and peer-reviewed research publications

4 Uses of HES Describing: HES is used to describe patterns of hospital activity, allowing comparisons to be made between areas and over time. Predicting: HES has been used to build predictive models (e.g. PARR and PARR-30 tools), and the Person-Based Resource Allocation (PBRA) funding formula Evaluating: Modern evaluation methods, such as propensity score matching, make use of HES to create synthetic controls HES has led to tens of thousands of audits and peer-reviewed research publications

5 The care.data programme will transform Hospital Episode Statistics (HES) into Care Episode Statistics (CES) The transformation of HES into CES will see a dramatic increase in the richness of hospital data extracted, and an expansion into all care settings, including primary, community, and social care. In addition, we will link data from the national clinical audits, disease registries, plus genomic data for up to 100,000 people who wish to donate their data as an altruistic act.

6 Theograph showing one person s hospital interactions over time, but now also showing primary care, mental health, and social care

7 Level of Care Social Care Mental Health Prescribing In-patient Emergency Out-patient Primary Care J F M A M J J A S O N D J F M A M J J A S O N D J F M A M Time Level of Event Time Pharmacy Diagnoses Results Tests/Imaging Procedures Consultant Nursing Obs Ambulance 21:00 22:00 23:00 0:00 1: :00 12-Jul-11 Nested Theograph showing details of in-hospital care, hour by hour

8 The care.data programme is designed to comply with all relevant information governance requirements: NHS Constitution Human Rights Act Data Protection Act 2 nd Caldicott Review Common Law Duty of Confidence

9 Five outbound flows of data from CES

10 4x Publications Technical Specification for GP extract Risk Stratification IG Advice Good Datasets (CCG strategy by 30 November) Consultation on additional hospital data

11 Linked interoperable data infrastructure which protects patients information and respects confidentiality Health and Care Providers Hospital care Primary care Clinical Data Prescribing Data Clinical Data Prescribing Data Data Feed Knowledge for All Safe Haven Validation Data Linkage Processing and derivations Move to event triggered updates NHSCB Commissioning Intelligence Tool Community care De identification Mental health Publication and Access Clinicians / Research Social care Data flows where standards and systems exist Health and Social Care Information Centre Information Information for for patients patients and and the the public public

12 Current position: Local initiatives and national registers operate largely in isolation Current Potential benefits from prescribing in care homes and home monitoring. Some leading hospital sites capture detailed data Phase 1 Mental health data GP data Patients with LTCs in active participation. Leading hospital sites prescribing results. Work with social care data pioneers. Phase 2 (TBC) Detailed hospital data Clinical audit data Disease registry data Patients with access e.g. to path results. Phase 3 (TBC) Community health services data Social care data 2012/ / / /16

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