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UK Renal Registry 2013 Annual Informatics Meeting

UK Renal Registry 2013 Annual Informatics Meeting. UK Renal Data Collection and Information Model. Dr Keith Simpson, Medical Advisor UKRR Peter Nicklin, Business Analyst, HSCIC Birmingham, 25 September 2013.

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UK Renal Registry 2013 Annual Informatics Meeting

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  1. UK Renal Registry 2013 Annual Informatics Meeting UK Renal Data Collection and Information Model Dr Keith Simpson, Medical Advisor UKRR Peter Nicklin, Business Analyst, HSCIC Birmingham, 25 September 2013

  2. National & regional Renal registries affiliated to the ERA EDTA Individual patient data Aggregated data .

  3. Survival of all RRT patients by PRDScottish renal units November 2009

  4. Mars Climate OrbiterNASA 1998

  5. N s

  6. Ft Lb s

  7. Dr Alison Almond SRA 2008

  8. UKRR Report 2011% HD patients with PTH within range (16 – 32 pmol/L

  9. UK Renal Data Collaboration(UKRDC) UK Renal Registry UKRR Scottish Renal Registry SRR Renal Patient View RPV Renal PatientView UK Registry for Rare Kidney Diseases RaDaR British Association for Paediatric Nephrology BAPN

  10. UK Renal Data RenalUnits RPV Labs UKRR SRR RaDaR NHSBT BAPN OtherNational data .

  11. Who sees the data LABS LABS RPV LABS Patient UK RR Renal Units SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc

  12. Renal Units meta data LABS LABS RPV LABS Patient UK RR SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc

  13. International Health Terminology Standards Development Organisation

  14. .

  15. Renal Units meta data EPRsSNOMED CTNLMCdm+d LABS LABS RPV LABS Patient UK RR SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc

  16. Renal Units meta data EPRsSNOMED CTNLMCdm+d LABS LABS RPV LABS granular datadata id GUID Patient UK RR SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc

  17. Renal Units meta data EPRsSNOMED CTNLMCdm+d LABS LABS RPV LABS granular datadata id GUID Patient UK RR standard messageseg FHIR SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc

  18. Renal Units meta data EPRsSNOMED CTNLMCdm+d LABS LABS RPV LABS granular datadata id GUID Patient UK RR standard messageseg FHIR SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc intelligent validationreal time messagesdata ownership, provenance,governance

  19. Renal Units meta data EPRsSNOMED CTNLMCdm+d LABS LABS RPV LABS granular datadata id GUID home dialysisdrug reconciliationsymptom reporting Patient UK RR standard messageseg FHIR SRR Research and Audit UK Renal Data Collaboration RaDaR NHSBT BAPN HES, RGOS etc Primary care – prescribing etc intelligent validationreal time messagesdata ownership, provenance,governance

  20. Quality in Medicine Bristol was awash withdata. There was enough information from the late 1980s onwardsto cause questions about mortality rates to be raised both inBristol and elsewhere had the mindset to do so existed’ Prof Sir Ian Kennedy The Bristol Royal Infirmary Inquiry. 2001 BrWsDif

  21. Information Model • Why have a model? • What the Model is and what it is not • What is in it? • State of Development

  22. Why have a model? • An orderly way of specifying information • Say things only once • Identify and understand the relationships between things

  23. Specify things only once Person Name Address Telephone email Related Person * * Clinical Agent Responsibility Patient NHS no DoB Sex Ethnicity * * Clinician Registration Title Role Clinical Team Team Name * * Team Membership

  24. Why a Model? Link things to each other

  25. Model will link things: Dialysis & samples Patient id 7309276388 Test requested U&E Time 08:17 25 Sep 13 Sampler Nurse E McKay Stage Pre dialysis During dialysis Before dialysis starts Patient id 7309276388 Test requested U&E Time 10:58 25 Sep 13 Sampler Nurse E McKay Stage During dialysis Patient id 7309276388 Test requested U&E Time 13:26 25 Sep 13 Sampler Nurse J Pugh Stage Post dialysis Dialysis Start: 08:22 25 Sep 13 End: 13:22 25 Sep 13 After dialysis

  26. And as it appears in the model

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