1. UK Renal Data Collaboration UKRR Audit Day 25 June 2013 keith.simpson@nhs.net

2. Involves Registries (UKRR & SRR) RPV Rare renal disease groups Patients Renal Association Renal units Renal IT industries Data Governance NHS, HSCIC, DoH, ISD UK Renal Data Collaboration

3. Governance & Risks Guiding Coalition Met in Edinburgh Nov 2012, 2 nd Meeting soon Chair Dr Afzal Chaudhry Position paper available Risk Register

4. Can we develop a project that better supports what we do: Care for patients data and info for patients Research basic and epidemiology, traditional & novel Teach & learn Run the services Quality improvement units could devolve some QI to the registries prompts (Tx list), trends (infections)... UK Renal Data Collaboration

5. . Renal Units

6. . UK Renal Data Collaboration Labs Renal Units

7. . UK Renal Data Collaboration Labs Renal Units NHSBT Other National data

8. RPV. Labs Renal Units UKRR SRR RaDaR NHSBT Other National data BAPN UK Renal Data Collaboration

9. hard to manage wasteful summarised data can’t be recovered perpetuates errors some unknown >> bias eg RRT start date & unit lost in transfer inflexible …

10. RPV. Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient sees~all their data BAPN UK Renal Data Collaboration

11. RPV. Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient moves renal unit BAPN UK Renal Data Collaboration

12. RPV. UK Renal Data Collaboration Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data HES, RGOS... Warehouse BAPN other ukrdc_it_09b 17022013 Primary care eg drug prescription Warehouse data viewable NHS net firewall

13. Prerequisites: Use 1) NHS and CHI numbers for patient id 2) real time comprehensive electronic records 3) national & international terminologies SNOMED CT, DM&D, eBNF, NLMC 4) information standards eg FHIR from HL7 Need firm lead from RAs and CDs Relevant to clinical governance if we hope to use IT to address eg CV catheter infection UK Renal Data Collaboration

14. Clinical terminology – SNOMED CT UK Renal Terminology Committee Membership and expert Guidance from Professional Terminologists from HSCIC UK Renal diagnosis subset Good links with ERA-EDTA Need good SNOMED CT interface in Renal Units (paper to be issued by HSCIC) Hospitals not encouraging use ?because paid by ICD9/10 No Teaching about it in Universities, Colleges and Professional associations

15. National Laboratory Medicine Catalogue (cross referenced to SNOMED CT)

16. PTH urate, Hb

17. UK Renal Data Collaboration Information Model 17 Presented by Peter Nicklin, HSCIC, 7 th June 2013

18. UKRDC Data Model – big picture

19. UKRDC Data Model – bigger picture

20. UKRDC Data Model – some headings

21. External Collaboration 1) UK Renal IT suppliers 2) Health and Social Care Information Centre member of renal terminology committee SNOMED CT, Drugs Medicines & Devices data model data transfer scheme advice on warehouse 3) Royal College of Pathologists & DoH NLMC 4) Senior trainee interested in participating

22. RPV. UK Renal Data Collaboration Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data HES, RGOS... Warehouse BAPN other ukrdc_it_09b 17022013 Primary care eg drug prescription Warehouse data viewable NHS net firewall