1. Update on the UK Renal Data Collaboration (UKRDC) UK Renal Registry 2015 Annual Audit Meeting Dr Keith Simpson Medical Adviser, UK Renal Registry

2. UK Renal Data Collaboration (UKRDC) Update on the UK Renal Data collaboration Bristol 05 March 2015 Keith Simpson Medical advisor to the UK Renal Registry keith.simpson@nhs.net

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

4. RPV. UK Renal Data Collaboration Labs Renal Units UKRR SRR RaDaR 10-20 gps NHSBT Other National data Warehouse BAPN

5. Demographic Data Clinical Contacts Results Biometric Data Transplantation Haemodialysis Peritoneal dialysis Quality Improvement & Audit Care Plan Clinical notes and correspondence Medication Summaries Decision support Links to Registries, RPV, Labs, Patient Admin. Commissioning

6. Who Everybody who legitimately handles data: Patients Unit Administrators Secretaries Clerkess Nurses Doctors Dieticians Occupational Therapists Physiotherapy …

7. Real time comprehensive links with 1y care, other units, UKT, Labs, PAS Standardised comms xml, HL7, agreed coding (SNOMED-CT) Link clinical problems, to do list, decision support, care plan Built in safety systems – defaults, prompts, warnings Images, statistical analyses, process control Incorporate email Cost tracking Equipment monitoring and service Voice recognition Support for research and teaching

8. Rules of engagement

9. Flexible Fast Functional Financed

10. Rules of engagement Flexible Fast Functional Financed (Fun)

11. UK Renal Registry UKRR Scottish Renal Registry SRR Patient View PV UK Registry for Rare Kidney Diseases RaDaR British Association for Paediatric Nephrology BAPN NHS Blood & Transplant Northern Ireland Nephrology Forum Welsh Renal Clinical Network UK Renal Data Collaboration (UKRDC) Board

12. Health Informatics Unit Royal College of Physicians Royal College of Pathologists Health and Social care Information Centre Dept of Health NHS England NHS National Services Scotland ERA-EDTA International Health Terminology Standards Development Organisation HL7 UK UK Renal IT suppliers UK Renal CD Forum Lots of help & Support

13. UK Renal Data Collaboration

14. Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Terminology Committee Dr Afzal Chaudhry Data set group Drs James Medcalf and Jamie Traynor Data set will be published on web Any data

15. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC

16. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose

17. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force

18. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common

19. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common Develop systems that meet the most exacting requirement of any member

20. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common Develop systems that meet the most exacting requirement of any member Use national and international standards if possible

21. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common Develop systems that meet the most exacting requirement of any member Use national and international standards if possible Retain flexibility

22. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common Develop systems that meet the most exacting requirement of any member Use national and international standards if possible Retain flexibility Respond quickly to new requirements

23. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common Develop systems that meet the most exacting requirement of any member Use national and international standards if possible Retain flexibility Respond quickly to new requirements Enable Innovative medical practice (not data comms)

24. UK Renal Data Collaboration Diagnosis SNOMED CT Procedures Lab data National Lab Med Catalogue NLMC Board Thurs 26 Feb 2015 Agreed all main relationships, roles, purpose UKRDC will enable but not force Capitalise on what we have in common Develop systems that meet the most exacting requirement of any member Use national and international standards if possible Retain flexibility Respond quickly to new requirements Enable Innovative medical practice (not data comms) Manage the data not the projects

25. UK Renal Data Collaboration Why is it so hard? What could go wrong?

27. Interoperability

28. UK Renal Data Collaboration

35. http://www.theguardian.com/world/2013/sep/05/nsa-gchq-encryption-codes-security

36. UK Renal Data Collaboration (UKRDC) A wee success story

37. UK Renal Data Collaboration (UKRDC) A wee success story D4D Grant Enable patients to lead in medicines reconciliation

41. RPV. UK Renal Data Collaboration Labs Renal Units UKRR SRR RaDaR 10-20 gps NHSBT Other National data Warehouse BAPN

42. Group discussions: What will the UKRDC mean for my renal unit? UK Renal Registry 2015 Annual Audit Meeting Chair: Ron Cullen Director, UK Renal Registry

43. To think about / discuss 1. What will the UKRDC mean for my renal unit? What do we do about OR how to prevent: 2. Change in political climate 3. Standards change 4. Doctor No 5. Manager’s who don’t get it 6. IT who don’t get it 7. We can’t afford it 8. Patients lose faith