1. Clinical Data Standards: The Building Blocks for Sharing Data Dr Lorna Ramsay Lee Davies Jamie Gray/ Phil Dalgleish National Clinical Dataset Development Programme

2. Progress in clinical data standards development Implementation – where’s it at? The next big thing – clinical data standards modelling What’s happening with SNOMED CT? National Clinical Dataset Development Programme

3. The NCDDP will support clinicians to develop interoperable national clinical data standards to facilitate the implementation of integrated care records across NHS Scotland. NCDDP Vision

4. Fit for clinical purpose Making sure the clinical content of IT systems is fit for clinical purpose: Care, Share, Compare Clinically led Standards developed & agreed by clinicians Interoperable Data recorded by different clinicians in different care settings using different systems can be brought together in an integrated patient record. NCDDP Aims

5. Care: Support direct patient care, informed by best practice guidance Purpose of national clinical data standards Share: Facilitate effective communication between health care professionals Compare: Support secondary uses including audit & clinical governance

6. Development process

7. Health & Social Care Data Dictionary www.datadictionary.scot.nhs.uk

8. HEIGHT Definition: Height in metres - measured without shoes Format: n.nn metres (to the nearest centimetre) Codes and values: N/A Sub data items: Verification level 0Unverified 1Verified Further information: If height cannot be measured, record recently documented or self-reported height (if reliable and realistic) as ‘unverified’. In certain groups or diseases, measurement of height may not be straightforward, e.g. infants, wheel chair/ bed bound, scoliosis, kyphosis. Guidance for such specific circumstances will be included in specialist data standards as appropriate. National Clinical Dataset Development Programme

9. Achievements so far >300 clinicians actively participated >2500 unique items published 60 approved sets of data standards 5 sets completed consultation 7 sets in development

10. What’s happening with SNOMED Clinical Terms?

11. SCT tools procured from Health Language Incorporated (HLi) available free to NHS Scotland organisations Lexplore SnomedCt Browser www.isdscotland.org/isd/4048.html SNOMED CT – NHS Scotland

12. Working with NCDDP to develop approach to ‘snomedisation’ of national clinical data standards as a key route to SCT implementation ISD Terminology Services www.isdscotland.org/isd/4426.html NHS Scotland Terminology Service

13. Clinical Data Standards, the building blocks for sharing data Implementation – where’s it at? National Clinical Dataset Development Programme

14. June 2006 – July 2007 team of 3 put together Produced Guidance Documents Defined, Designed and enhanced Support Processes Early engagement with systems developers National Clinical Dataset Development Programme

15. Accurate and Robust Implementation Consistent use of Standards Interoperability (SEHD Health Department Letter (2005) 46).. National Clinical Dataset Development Programme

16. Implementation activity Nationally procured systems Ongoing national procurements New nationally developed systems Existing national systems Others – local, regional and national

17. Nationally procured systems: EDIS (Emergency Department Information System) NaSH (National Sexual Health system) Implementation activity

18. Ongoing national procurements: IPACC (Integrated Primary and Community Care system) –Mental Health (CAHMS, adult/child) –Nursing Care, Palliative Care) –AHP –Child Health –Generic –Long Term Condition –eCare –Single Shared Assessment PMS (Patient Management System) Implementation activity

19. New nationally developed systems: SCI-DC (SCI Diabetes Clinical) SCI-CHD (SCI Coronary Heart Disease) GCS (Generic Clinical System) –Cancers (breast, gynaecological, head & neck, etc) –Community Nursing Clinical System Implementation activity

20. Existing national systems: CHI Database (master patient index) SCI Store (national repository) SCI Gateway (referrals, discharges, lab results, etc) Implementation activity

21. Others – local, regional and national: COPD - LanarkshireOrthopaedic Surgery & Elective Admission System – Lothian eSAY - LanarkshirePaediatric Epilepsy Network – NISG Face (Mental Health System) – Ayrshire & Arran Rheumatology - Glasgow Hope Rehab System – Scottish Centre for Healthy Working Lives Safer Today Safer Tomorrow - QIS Marie Curie Cancer Care (EPR) - Tayside SCCRS MS Society ScotlandSFHS- Scottish Family History Study NCCIAS (Colposcopy) Implementation activity

22. Step 3 Step 3: Support/ Guidance provided by NCDDP Step 1: Step 1: Early engagement with all stakeholders Step 2 Step 2: Stakeholder provides proposed dataset Step 4: Step 4: Suppliers implement NCDDP Standards Step 5: Step 5: Post implementation Communication Step 6: Step 6: Maintain & Improve compliance Review and Communications National Clinical Dataset Development Programme      

23. www.datadictionary.scot.nhs.uk

24. Implementation resources

25. National Clinical Dataset Development Programme

26. Implementation – where’s it at?

27. Lee Davies Programme Development Manager, NCDDP Clinical Data Standards Modelling: Compound Clinical Concepts National Clinical Dataset Development Programme

28. Data Dictionary Clinical Information Standards Continuous Review National Clinical Dataset Development Programme

29.  Development and implementation of new clinically intuitive headings assisting structure and navigation through the data dictionary  Data Dictionary software changes e.g. Tagging Data Dictionary National Clinical Dataset Development Programme

30.  Direct access to required standards through the dictionary  Presents less opportunity to overlook standards  Reduces the risk of duplication Benefits National Clinical Dataset Development Programme

31. Clinical Information Standards  Structure of Information Standards  Development Model  Extensibility and Future Proofing National Clinical Dataset Development Programme

32.  Splits the clinical knowledge domain from: Technical Terminology Which are complimentary and interoperable at implementation  Groupings of clinically relevant and/or related information based on existing approved data standards and focus on reuse  Concept of maximal information which can be constrained to support clinical specificity at a later stage - supports changes in Best Practice Compound Clinical Concepts National Clinical Dataset Development Programme

33. Benefits  Extended value sets refined for reuse  Groups of related standards (inclusive not exclusive and are optional)  Enhanced quality National Clinical Dataset Development Programme

34. Specific Constraint Layer Archetype Clinical Knowledge Layer (Compound Clinical Concepts) Terminology Layer (SNOMED CT) Technical Layer (XML, HL7, 13606) National Clinical Dataset Development Programme

36. Connecting for Health NEHTA OpenEHR National Clinical Dataset Development Programme

37. Next Steps  Approach developed  Specific Development – Focus on Adverse Reactions National Clinical Dataset Development Programme

38. Contact Us Team e-mail: NCDDPsupportteam@isd.csa.scot.nhs.uk Website: www.clinicaldatasets.scot.nhs.uk eLibrary: www.elib.scot.nhs.uk/SharedSpace/ncddp Data Dictionary: www.datadictionary.scot.nhs.uk National Clinical Dataset Development Programme

39. Thank You National Clinical Dataset Development Programme