1. UKRDC_KS_UKRR_informatics_nn_25092014.ppx

2. UK Renal Data Collaboration (UKRDC) What does it mean for The registries, renal system suppliers, renal units, researchers, patients UKRR Informatics 25 Sept 2014 Keith Simpson Medical advisor to the UK Renal Registry keith.simpson@nhs.net

3. 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)

4. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration

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

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

7. Website www.rixg.org.uk Board Members professional & patients IT suppliers Terminology, codes, dataset Diagnoses & Procedures SNOMED-CT Lab Tests NLMC Link with HSCIC Infrastructure Hardware, software, comms Projects UKRDC – structure

8. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration The Registry Renal system suppliers Renal units Researchers Patients

9. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration The Registry Renal system suppliers Renal units Researchers Patients

11. Things we can’t do alone real time safety monitoring Things we can’t afford to do alone Research collaboration Access to ultra specialists – Rare Renal Patient involvement – Patient View

12. Standards vs innovation

17. Clinical terms get at the meaning of things – ‘semantic interoperability’

18. Medical terminology In 2000, more than 225,000 inpatients in the USA died because of drug reactions and medical errors. Reasons include: medical terms that are similar using the wrong abbreviation. eg RTA, BG, BM, MI... $77 billion in extra costs Starfield B., JAMA 26 July 2000; 284(4):483-5

22. Clinical terms getting at the meaning of things – ‘semantic interoperability’ acetaminophen = paracetamol ~ Panadol... dm+d

28. www.rcplondon.ac.uk/health-informatics-unit

29. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration The Registry Renal system suppliers Renal units Researchers Patients

30. mean for IT suppliers Lots of work little reward BS&T Business opportunities

31. SNOMED CT within Renal Applications http://www.renal.org/docs Sept 2013

32. Lab data NLMC

33. CDA is a Health Level 7 (HL7) standard www.cdc.gov/nhsn/CDA/ Ver 2 or 3

34. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration The Registry Renal system suppliers Renal units Researchers Patients

35. Patients enrolling from all areas Add new data items and meta data Direct data feeds from labs Secure research data Peer to peer data transmission

36. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration The Registry Renal system suppliers Renal units Researchers Patients

37. Quality Improvement Collect any data – and make sense of of it because meta data Linking to external data sets – analyse in novel ways offer new services to patients and renal units eg decision support outcome prediction trend spotting research hubs, collaboration with non medical university departments and industry

38. Can we develop a project that supports what we do: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration The Registry Renal system suppliers Renal units Researchers Patients

42. Summary A new collaboration for managing data in UK Renal Medicine Using industry standard tools Enabling patients to see and contribute to their medical record Supporting our 5 functions Requires support from all of us

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