Data Linkage Service Garry Coleman, Health and Social Care Information Centre

Linking primary and secondary healthcare datasets - The NHS IC will provide a service to link primary and secondary healthcare datasets from September 2012 {Autumn Statement, 2011] Linking primary and secondary healthcare datasets - The NHS IC will provide a service to link primary and secondary healthcare datasets from September 2012 to reinforce the UK’s position as a global centre for research and analytics and boost UK life sciences. This service will also be used and commissioned by the new specialist research service (CPRD) for their specific research purposes, and will operate on a self-financing basis [Open Data Commitments, 2011] No pressure then….

…on all of us 3.24 …patient activity data … combined with other data such as finance, estates, suppliers and HR, will provide more timely and accurate information to improve planning and delivery of core services, for research and … identify issues … before they become serious problems 4.42 HSCIC…increasingly making anonymised, linked data available for re-use by information intermediaries…who can then add value

Linking primary and secondary healthcare datasets - The Government will provide a service to link primary & secondary healthcare datasets from Sept 2012 to reinforce the UK’s position as a global centre for research & analytics & boost UK life sciences. To encourage innovation and investment in UK life sciences, the IC will set up a secure data linkage service as part of its core delivery service by September deliver data extracts, using linked data from primary & secondary care & other sources, on a routine basis at an unidentifiable, individual level The service will…. be used and commissioned by CPRD for their specific research purposes. be available to all users of health and care information in order to drive improvements in care, enterprise and innovation operate on a self-financing basis where users pay the cost of the linking process be informed by work that Government will progress to develop a programme with industry & academia, identifying specified datasets for open publication & linkage as well as championing emerging data-based innovations in health & life sciences Current Commitments - Data Linkage Service

Data Collection and Quality To have lead responsibility for data collection and assuring the data quality of those returns National Data Repository To be the national repository for data across health care, public health and adult social care Enable data linkage within a strong information governance framework Better Access To make data widely available, for use by third parties, and to meet the needs of a multiplicity of customers To be the national source of Health and Social care information for improving patient care and outcomes How: Our vision

Data Linkage Service A service which provides extracts of datasets created by data linkage on an ad-hoc or regular basis. Where appropriate governance approvals are in place. the service will provide: –such extracts in pseudonymised form to customers (using customer data for linkage if requested); –such extracts in identifiable form to customers (using customer data for linkage where appropriate); –regular pseudonymised extracts based on HSCIC linked data. Data Linkage is usually based on patient/person identifiers, although linkage can be done on other data items

Not a standing start…

Data Linkage – current examples Recent/current projects include: Encryption of patient identifiers to match HES extracts Linking patient data to HES for a hospital consultant’s internal audit Validating data collected directly at hospital by researchers to HE Cohort management for “Million Women” since 1998 Linking GP data to HES Linking hospital prescribing data to HES HFEA Study of 250,000 women who have had IVF treatment Linking HES to road traffic accident injury data Linking PROMS to local patient experience data List cleaning and flagging for UK Biobank

Publications Identity Management Pseudonymisation Linkage HES PDS Proms Mortality GP Clinical Audit Prescribing MHMDS Other Published Linked data Clinical Linked Data Research Linked Data Commissioning Linked Data Other Linked Data Commercial Information Linked Data Data HSCIC Linkage Services Linked Data Outputs Data Extracts So much more…

Garry Coleman