1. PRD_TheProject_KS_09102012.ppx

2. The new ERA-EDTA PRDs UK Renal SNOMED CT subset TheProject Keith Simpson UKRR Advisor keith.simpson@nhs.net Thanks to ERA-EDTA Registry: Kitty Jager Managing Dir and members of the Coding and Terminology Group (UK members Charlie Thomson, Venkat Raman) UKRR: Afzal Chaudhry, Ron Cullen NHS TC Yong Gao, Denise Downs, Ian Arrowsmith, Ed Cheetham:

4. PRD Headings. ERA-EDTA PRD ERA-EDTA Primary Renal Diagnosis (PRD) terms Histology Clinical history Family history Clinical Exam Biochemistry Immunology Urine analysis Imaging Gene test Other criteria & notes SNOMED CT concept identifier for focus concept SNOMED CT fully specified name SNOMED CT expression constraint Mapping to old PRD code Mapping to old PRD term Online Mendelian Inheritance in Man - link ICD10 code ICD10 rubric

5. ERA-EDTA Primary Renal Diagnosis.

6. .

7. The diagnosis The term we use = the ‘PRD’ The evidence <> a definition (yet) Notes Because we don’t have a definition.

8. The diagnosis The term we use = the ‘PRD’ The evidence <> a definition (yet) Notes Because we don’t have a definition.

9. PRD SNOMED id Concept mapping of the meaning.

10. .

11. Why map to SNOMED?.

12. SNOMED CT Provides Extensive and well supported list of terms current language translation, literature links eg BMJ, Map of Medicine decision support, queries using multiple domain hierarchies, secondary functions eg research, hospital management

13. SNOMED CT Provides Extensive and well supported list of terms current language translation, literature links eg BMJ, Map of Medicine decision support, queries using multiple domain hierarchies, secondary functions eg research, hospital management Will soon be the only terminology supported by the NHS in the UK

14. Includes foreign language and local terms.

15. Conveys meaning not just a label relationships and attributes like: Is a kidney disease Is a ….

16. .

17. UK Renal SNOMED CT subset

18. . Includes: most of the existing renal terms – about 1100 and the new ERA EDTA PRDs Managed by: UK Renal Terminology Committee (RIXG & RA) working with the NHS Terminology Centre Purpose: Patient records, Registries, RADAR, RDGs, research, TheProject

19. Renal IT suppliers keen to implement meeting in Bristol 19 Sept 2012

20. TheProject

21. . Labs Renal Units

22. RPV. TheProject Labs Renal Units UKRR SRR RaDaR NHSBT Other National data BAPN

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

24. RPV. TheProject Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient sees~all their data RPV type data transfer, at least daily BAPN

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

26. RPV. TheProject Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient moves renal unit BAPN

27. RPV. TheProject Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient moves renal unit BAPN All potential participants and renal IT suppliers have agreed in principle

28. The new ERA-EDTA PRDs UK Renal SNOMED CT subset TheProject Summary

30. ICD 10 Hierarchy A bacterial infections B other infections C malignancies D benign neoplasms E endocrine G CNS … N renal

31. ICD 10 Hierarchy A bacterial infections incl meningiococcal meningitis B other infections incl H. influenza C malignancies and sarcoid D benign neoplasms E endocrine G CNS incl H. influenzae meningitis and Systemic atrophy of CNS in myxoedema … N renal

32. ICD 10 Nephrotic

33. N04

34. ICD10 Terms including ‘renal’ one example per letter

35. ICD10 which language ?

38. TheProject For discussion: How a UK renal data warehouse be organised and managed security data and clinical governance management – coalition anonymisation/named data encryption data transfer - ?XML Schema – HL7 data validation ?practical on anonymous data, where to do flexibility – allow new fields = data items to be added by user Include meta data …

39. TheProject Granular data Include fields for meta data … date time relative time (pre dose, post dialysis … ) sample if not obvious (venous, arterial blood, venous side of dialyser ) result unit of measurement (eg Hb g/L, g/dL, mmol/L) reference range assay method (eg PTH)

40. TheProject Granular data Diagnoses and procedures – Store at highest level required by initiator Aggregate later where required Use SNOMED CT terms & codes (UK Renal Terminology Committee)

41. TheProject Derived data: store raw data where possible/ practical derive results eg BMI, URR …

42. TheProject Involves Patients Renal units already keen to join Registries (UKRR & SRR) Renal Association RPV RaDar Groups Renal IT industries Data Governance NHS, DoH, ISD

43. TheProject Can we develop a project that better supports what we do: Care for patients Quality improvement- units could devolve some QI to the registries prompts (Tx list), trends (infections) … Run the services Research – basic and epidemiology Teach & learn