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England 85%

Sweden NHS and other Data Linkage for research CPRD Clinical Practice Research Datalink john.parkinson@cprd.com. Scotland 9%. NI 2%. England 85%. Wales 5%. More dimensions t o data. Biologics Standards & Controls. Medicines Devices CT Regulator. UK Life Science Strategy

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England 85%

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  1. SwedenNHS and other Data Linkage for researchCPRD Clinical Practice Research Datalinkjohn.parkinson@cprd.com

  2. Scotland 9% NI 2% England 85% Wales 5%

  3. More dimensions to data Biologics Standards & Controls Medicines Devices CT Regulator

  4. UK Life Science Strategy Prime Minister’s announcement In partnership with NIHR, to service the specialised needs of the research and life sciences communities. It will provide services to enable health research both nationally and internationally, support improvements to the health, and wealth of the nation. I10

  5. OTHER Unlocking the potential of NHS Patient Data in ResearchObservational & Interventional

  6. Clinical Care Observational Data Clinical Guidelines Observational Research New treatments Interventional Research

  7. ObservationalInterventional • Randomised • Happens ideally • Experimental • Non-randomised • As happens in real world • Natural • Internal (-) • External + • Internal + • External – Pragmatic Real World Randomisation

  8. National central Data - ONS Environ. Air Poll. Club Card Data ? 100% Death Birth Demography Disease Reg. 5 Dental Social c. Linkage on NHS# And Or PC, sex, DOB Approved global Researchers Consented Clinical Trials Biosample PROs Lab Path Microb. NHS Datasets I o Care 8500Practices PHE Cancer BINOCAR 2 o Care Hospital+Rx NHS Audits 40 Granularity % 100%

  9. National datasets diabetes, pain, biologics, asthma, immunod, IBD, haemophilia,cystic f., Dementia, Schizophrenia, psychological treatments Cardiac surgery, CHF, Congen.HD., MI, Pul. Hypert, Sudden Arrhyt. Head/neck, lung, breast, bowel, urological, childhood Epilepsy, Neonatal, Paed. IC, Diabetes Continence, falls/bone, hip fracture, sentinel strokes

  10. No Hugging

  11. The Power of the 54 millionThe Power of theSystem Big data is high volume, high velocity, and/or high varietyinformation assets that require new forms of processing to enable enhanced decision making, insight discovery and process optimization.

  12. Big NHS data Processing times Weeks Hours Minutes Seconds 2000 2005 2013

  13. CPRD Governance

  14. Approval STEPS (12) for any Research use of Anonymised Coded CPRD data Research Output Research use of data 7. Validate Use CPRD Output check 6. Enable Research Use Audit CPRD to user SOP CPRD to user Legal CPRD to user 5. Enable Protocol Scientific ISAC 4. Enable Research Enable, via Practice, Linkage Dissent Ethics MREC 3. Enable Linkage Confidentiality NIGB 2. Enable Data Access Governance Data Controller 1. Enable Operation Enable, via GP, Patient Dissent Governance IC Governance CPRD Governance MHRA Governance DH

  15. CPRD (MHRA) Summary Data Stewardship Map Key to Symbols Charter or statement Privacy Enhancing Technology Physical Security Legal agreement Governance/Risk minimisation approvals Contracts of Employment Right of Audit Standard Operating Procedure Ch PET PS L G CoE A SOP

  16. Ch Ch Ch Ch CoE PET PS PET PS PET PET G PET PET PET G PS PS PS PS G G PS CoE G G PS CoE PET G CPRD (MHRA) Summary Data Stewardship Map Inbound (Data Acquisition) Patient Communication Materials: Posters, leaflets, website copy Data Subject Domain Right to Dissent NHS Domain (Data Source) Primary care Clinical Datawith Personal IDS Other NHSClinical Data with Personal IDS End to End IG Policy SOP SOP Separation of Clinical Data and Personal IDs Clinical IDs Data handled as with Primary Care Data but data may be federated not warehoused Practice Identity Keyed NHS#, DOB, DOD, Sex and postcode with to Pseudo ID 1 using Key1 Names, addresses removed IG Tool- Kit & IG Man- age- ment Clinical Data with Pseudo ID1 using Key1 Data encrypted Data on Secure N3 network IDs + Pseudo ID n Data on Secure N3 network CPRD Trusted Linkage Domain A A National Information Governance Board / ECC Data to High Security CPRD Data Centre 1 Data Warehouse (with Pseudo ID1) Physical separation between Data centres Data to High Security HSCIC Data Centre 2 A SOP L CPRD Data Domain Data only accessible to Limited Documented /Controlled Users PET Data to Research Data Store With Pseudo ID2 In High Security Data Centre 1 Linker file - only pseudo IDs and ID derivations Pseudo ID1 Transformed to Pseudo ID 2 using Key2 SOP Next Page

  17. CPRD (MHRA) Summary Data Stewardship Map Outbound (Data Provision) CPRD Data Domain Previous Page End to End IG Policy PS CPRD Caldicott Guardian G Data only accessible to Limited Documented/Controlled Users Data to Research Data Store With Pseudo ID2 In High Security Data Centre 1 SOP L MHRA/CPRD Senior Information Risk Officer G G CoE G CPRD Information Asset Owner G IG Tool- Kit & IG Man- age- ment CPRD Gold CPRD Silver PET PET G RSA Key + Certificate only computers Data Provision SOP “Researcher” Domain Ethics (REC) approval G Independent Scientific approval G L Research Organisations PS Research Users SOP G A PET Small cell Policy Public Domain SOP Research Output Research Output report G G

  18. Triple linkage- MI -17,964nBMJ paper May 21st 2013 MINAP 9438, 52.5% 1488 1099 1290 CPRD 13380 74.5% 5561 HES 11998, 67.9% 1806 3188 3532

  19. DataBiases channellingRandomisationClinical Trials

  20. Phase 3 to Real World… …of BIG healthdata

  21. Phase 3 to Real World

  22. CPRD Pragmatic Point of Care randomisation • In one GP EHR - InPS • On-going inclusion in EMIS/TPP • Auto-detection of patients via EHR • On screen messages • Randomisation • Normal prescription • All data in EHR

  23. Trial viz

  24. The Power of the 54 million Rare diseases, rare outcomes, Drugs in pregnancy, pregnancy outcomes, Infectious diseases, Children, Risk Management Tracking, Vaccines, Novel statistical techniques. Clinical Trials Dynamic Risk Scoring

  25. DATA

  26. Thanksjohn.parkinson@cprd.com

  27. N Practice Filters-Post Code, LRN, CLRN, AHSN Options Modify

  28. CPRD Trialaviz showing where the patients are by “large population” regions

  29. CPRD Trialaviz- World Visualiser shows top level data on the potential number of patients who meet a series of criteria.

  30. CPRD Trialaviz viewer provides for a random series of patients who meet set criteria there record in two views- across a number of years and then magnified to a daily basis. In this case a further magnification of 1o therapy events shows what was prescribed. Any event can be hover over to understand the journey of care.

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