1. Health Information Supplier Forum ‘Open data, a platform for change’ Garry Coleman, Health & Social Care Information Centre

2. Agenda Context Data Linkage Service Programme Usage Open Data Care.data

3. Medicine is becoming more of an information science Don Jones, Qualcomm Life, The Economist, 1 December 2012 ‘ The push to adopt new digital technologies in health care will have to come not from doctors but from the public’ Eric Topol, The Creative Destruction of Medicine

4. Data Linkage

5. The Health and Social Care Information Centre We are the national source of health and social care information We collect, process, link, analyse and publish national health and social care information New role under Health and Social Care Act 2012 focuses on improving access to data and improving data scope, quality and breadth New powers allow us to create added value by linking data at identifiable level

6. The Health and Social Care Information Centre Looking to make data available via a number of channels, sourced from national data repository Repository would contain data from a number of different sources Default position and track record in making anonymised data available as Open Data

7. The Data Linkage Service New service launched in September 2012 Brought together two established data linkage services with over 50 years’ experience

8. Available via the Data Linkage Service Extracts of pseudonymised datasets that are: Created by linking data held by the HSCIC Created by linking data held by the HSCIC to customer data Extracts of linked data in identifiable form: Where appropriate information governance is in place Cohort flagging for long term mortality and morbidity follow-up NHS Number tracing and list cleaning

9. The Data Linkage Programme Increasing number of linked datasets available on a regular basis from April 2013 Increasing scope for customers to link their own data to data held by the HSCIC Building capacity and capability to support ‘bespoke’ linkage requests Improving the application process Engaging with and responding to requirements of customers

10. The Data Linkage Programme Moving the Data Linkage Service onto the strategic IT platform Linking by ‘default’ and providing data to customers according to their purpose Continuing to improve customer experience Ensuring the service has funding to continue in the long term Due to complete in 2014

11. Developing Key Partnerships The HSCIC has a memorandum of understanding with CPRD that research uses of data are enabled via the CPRD system and HSCIC provides the data linkage services for CPRD. If your purpose for linked data requires the rigour of a structured methodology and the approval of ethics and scientific committees (formal research) then you should approach CPRD. If it is for another purpose e.g. business or marketing intelligence then you should approach HSCIC HSCIC and CPRD work closely together to ensure that where customers are unsure they are referred to the appropriate organisation. Note that data provided for one purpose cannot be re-used for an alternative purpose e.g. data provided to support business intelligence cannot be used as part of formal research to support the development of medication or medical devices. The Clinical Practice Research Datalink (CPRD) is the English NHS Observational Data and Interventional Research Service

12. What is Data Linkage used for? Performance Assessment and Evaluation Likely customers: Local and national health and social care organisations Business Intelligence Likely customers: Information intermediaries, commercial sector, life science community Patient Status and Tracking Likely customers: Anyone who wishes to improve or maintain the quality of their data Research Likely customers: Academics and universities, third sector

13. Open Data

14. The UK pioneers Open Data at home Source: Cabinet Office 2012

15. Care.data

16. What is care.data? NHS Commissioning Board has given the HSCIC the challenge to develop a modern data service for the NHS called care.data. Care.data is one of the key priorities of the NHS Commissioning Board for the year. Care.data will provide timely, accurate data derived from information collected as part of the care process and linked along care pathways.

17. care.data programme Planning to receive more data sets Increasing levels of automation Expanding current platforms Procuring replacement platforms Learning how to work as a new HSCIC

18. Hospital care Primary care Prescribing Data Data flows where standards and systems exist Prescribing Data Clinical Data Data Linkage De-identification Safe Haven Health and Social Care Information Centre Validation Data Feed Health and Care Providers Processing and derivations Clinical Data Community care Mental health Social care Information for patients and the public Knowledge for All New platform approach Data infrastructure which protects patients’ information Publication and Access Information for Commissione rs Information Intermediaries Research Information for patients and the public

19. Benefits Care.data will enable: Commissioners to understand the outcome of care being provided and inform decisions on commissioning care. Identification of areas for service improvement. Linkage of data to provide a full picture of care and treatment across a care pathway. Analysis of how services are used to predict future demand (e.g. hospital admissions). Publication of aggregated and anonymised data about patient outcomes contributing to transparency agenda. Research utilising large-scale aggregated and anonymised data.

20. Datasets Data Set PROMS Diagnostic Imaging Data Hospital Episode Statistics Patient demographics Psychological Therapies Hospital activity & PbR Mental Health Choose and Book GP requested pathology Primary care commissioning (GPES) GP prescriptions Community information Maternity Children’s CAMHS The care.data programme will make available these datasets to support commissioning and be available for linkage during the 2013/14 financial year.

21. MilestonePeriod OBC - Treasury ApprovalQ1 2013/14 SIAM Contract AwardQ1 2013/14 Common Services Intermediate Contract AwardQ2 2013/14 Infrastructure as a Service Contract AwardQ2 2013/14 Active Phase Competition OpenQ2 2013/14 Active Phase Competition ClosedQ3 2013/14 Common Services Main Contract AwardQ3 2013/14 Information Service (PBR) Contract AwardQ4 2013/14 PBR Service LiveQ1 2014/15 ODP MilestonePeriod OBC - Treasury Approval Q1 2013/14 SIAM Contract Award Q1 2013/14 Common Services Intermediate Contract Award Q2 2013/14 Infrastructure as a Service Contract Award Q2 2013/14 Active Phase Competition Open Q2 2013/14 Active Phase Competition Closed Q3 2013/14 Common Services Main Contract Award Q3 2013/14 Information Service (PBR) Contract Award Q4 2013/14 PBR Service Live Q1 2015/16

22. Thank you for listening Garry.coleman@ic.nhs.uk Follow us on twitter: @hscicOpenData @NHSIC