1. Getting the detail right Standardisation and SNOMED CT © Nottingham University Hospitals NHS Trust

2. Because we can From paper to EHR © Nottingham University Hospitals NHS Trust

3. Because we must The treatment for rheumatoid arthritis The treatment for this instance of rheumatoid arthritis occurring in a patient with these characteristics Stratified medicine Specialised commissioning High cost drugs © Nottingham University Hospitals NHS Trust

4. We already have plenty of data © Nottingham University Hospitals NHS Trust

5. We just need to organise it better © Nottingham University Hospitals NHS Trust

6. Getting SNOMED CT content right © Nottingham University Hospitals NHS Trust

7. Getting SNOMED CT content right Don’t start with SNOMED CT Existing SNOMED CT content in most specialties will cover around 70% of necessary concepts –Missing concepts –Misrepresented concepts –Outdated terms –Non-existent concepts

8. Getting SNOMED CT content right Start with your concept set and clinical vocabulary

9. Getting SNOMED CT content right Start with your concept set and clinical vocabulary Build an information model

10. Getting SNOMED CT content right Start with your concept set and clinical vocabulary Build an information model Compare with existing SNOMED CT content © Nottingham University Hospitals NHS Trust

11. Getting SNOMED CT content right Start with your concept set and clinical vocabulary Build an information model Compare with existing SNOMED CT content Seek SNOMED CT content improvement where necessary © Nottingham University Hospitals NHS Trust

12. Getting SNOMED CT content right Start with your concept set and clinical vocabulary Build an information model Compare with existing SNOMED CT content Seek SNOMED CT content improvement where necessary Protect your necessary and sufficient term set with a SNOMED CT simple reference set © Nottingham University Hospitals NHS Trust

13. Separating diagnosis and phenotype DiagnosisPhenotype + Keep this broadCapture the detail here © Nottingham University Hospitals NHS Trust

14. How not to do it ICD-10: M05.0 Felty syndrome © Nottingham University Hospitals NHS Trust

15. How not to do it Rheumatoid arthritis with splenomegaly and leukopenia Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, non-erosive ICD-10: M05.0 Felty syndromeICD-11: © Nottingham University Hospitals NHS Trust

16. How not to do it Rheumatoid arthritis with splenomegaly and leukopenia +/- Rheumatoid factor +/- Anti-CCP antibodies +/- Erosions © Nottingham University Hospitals NHS Trust

17. How not to do it Rheumatoid arthritis with splenomegaly and leukopenia Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, non-erosive Enough © Nottingham University Hospitals NHS Trust

18. How not to do it Rheumatoid arthritis with splenomegaly and leukopenia Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, non-erosive Enough Too much © Nottingham University Hospitals NHS Trust

19. How not to do it Rheumatoid arthritis with splenomegaly and leukopenia Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, both rheumatoid factor and anti-citrullinated protein antibody positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, erosive Rheumatoid arthritis with splenomegaly and leukopenia, rheumatoid factor positive, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology negative, non-erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, erosive Rheumatoid arthritis with splenomegaly and leukopenia, serology not specified, non-erosive Enough Too much Don’t exist © Nottingham University Hospitals NHS Trust

20. A diagnosis cluster Seronegative rheumatoid arthritis Seropositive rheumatoid arthritis Rheumatoid arthritis © Nottingham University Hospitals NHS Trust

21. A diagnosis cluster with coding Seronegative rheumatoid arthritis SCTID:239792003 ICD-10:M06.0 Seropositive rheumatoid arthritis SCTID:239791005 ICD-10:M05.9 Rheumatoid arthritis SCTID:69896004 ICD-10:M06.9 © Nottingham University Hospitals NHS Trust

22. A diagnosis cluster with coding Seronegative rheumatoid arthritis SCTID:239792003 Seropositive rheumatoid arthritis SCTID:239791005 Rheumatoid arthritis SCTID:69896004 Arthritis SCTID:3723001 Autoimmune disorder SCTID:8582009 © Nottingham University Hospitals NHS Trust

23. A diagnosis cluster with coding Seronegative rheumatoid arthritis SCTID:239792003 Seropositive rheumatoid arthritis SCTID:239791005 Rheumatoid arthritis SCTID:69896004 Arthritis SCTID:3723001 Autoimmune disorder SCTID:8582009 © Nottingham University Hospitals NHS Trust

24. Information loss Reducing a diagnosis to a single piece of data, however coded, removes almost all clinical insights © Nottingham University Hospitals NHS Trust

25. Adding clinical insight Rheumatoid arthritisHigh cost drug disease Disease associated with increased cardiovascular mortality Smoking related diseaseLung cancer © Nottingham University Hospitals NHS Trust

26. Adding clinical insight Rheumatoid arthritisHigh cost drug disease Disease associated with increased cardiovascular mortality Smoking related diseaseLung cancer © Nottingham University Hospitals NHS Trust

27. Concept map of arthritis © Nottingham University Hospitals NHS Trust

28. Capturing phenotype Seropositive rheumatoid arthritis © Nottingham University Hospitals NHS Trust

29. Capturing phenotype Seropositive rheumatoid arthritis Core data: RF status CCP status Erosions RA-ILD RA-Vasculitis Nodules © Nottingham University Hospitals NHS Trust

30. Diagnosis + core + longitudinal data Seropositive rheumatoid arthritis Drug monitoring: FBC LFTs U&Es Disease monitoring: DAS 28 HAQ CRP Outcome measures including PROMS © Nottingham University Hospitals NHS Trust

31. In conclusion Electronic health records will provide unprecedented opportunities to exploit routinely collected clinical data for many purposes We can only take advantage of the opportunities presented by EHRs if we develop standardised data sets mapped to appropriate coding SNOMED CT is conceptually rich but needs content improvement and ongoing ownership and stewardship of specialty reference sets Optimum use of clinical data requires comprehensive information models linked to simple user interfaces Clinicians working with specialist societies and their Royal Colleges must play a central role in these developments © Nottingham University Hospitals NHS Trust