John McGeagh, PhD | NIHR CLAHRC West Collaboration for Leadership in Applied Health Research and Care The power and potential pitfalls of working with linked records in public health research and practice What is data linkage? bringing together two or more sources of information which relate to the same individual, event, institution or place. Unique identifier deterministic Multiple fields probabilistic Why is it important? Enrich data Environmental factors Continuity of care Challenges Ethical / legal Opt-in/Opt-out Deductive-disclosure Technical Hosting protocol Social Public anxiety DATA LINKAGE IN PRACTICE Care.data Link GP records to secondary care Provide to third party researchers: academics, pharmaceutical companies, insurance companies The care.data programme will bring together securely, health and social care information from different settings in order to see whats working really well in the NHS and what could be done better. The benefits BIG DATA Can answer smart questions Early diagnosis Disease prevention Cost effectiveness and standardisation What went wrong? Sept Feb Feb Feb 2014 Local Schemes Bristol, North Somerset, and South Gloucestershire (BaNES*) *BaNES considering joining the scheme Cheltenham, Gloucestershire Local Shared Care RecordDevon Connecting Care Organisations involved in Connecting Care: Bristol Clinical Commissioning Group; North Somerset Clinical Commissioning Group; South Gloucestershire Clinical Commissioning Group; Bristol City Council; North Somerset Council; South Gloucestershire Council; North Bristol NHS Trust; University Hospitals Bristol NHS Foundation Trust; Weston Area Health NHS Trust; GP Practices in South Gloucestershire, North Somerset and Bristol; Bristol Community Health; North Somerset Community Partnership; Sirona Care and Health (South Gloucestershire); BrisDoc; Avon and Wiltshire Mental Health Partnership NHS Trust; Bristol Mental Health;South Western Ambulance Service NHS Foundation Trust; West of England Academic Health and Science Network; South, Central and West Commissioning Support Unit. Connects primary, secondary, tertiary Opt-out Point of care Go Live in Expanding to 10,000 users by 2020 No secondary use of data Care.data fallout. Looking to expand to include secondary use LINKED DATA AND THE CLAHRC Register of patients willing to take part in research Linkage of NHS medical and related records -Informed about relevant research projects -Provide anonymised data for research Matches interested people to high quality research projects Reach West Reach West Patients and members of the public Give consent to join Reach West and have data linked Invited to participate in relevant research projects -Provide individual informed consent to take part Researchers Apply to Reach West for help recruiting eligible participants or for anonymised data Reach West Data warehouse Integration & Link CCGs * Participant Reach West Website Researcher Search*Initially pilot with UHBT Conclusions Data linkage has huge potential Must be treated with care to safeguard identity On-going initiatives to improve availability of data for research purposes Acknowledgements CLAHRC West JOHN.MCGEAGHJOHNMCGEAGH THANK YOU