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UK Renal Data Collaboration: Improving Care, Research, and Education in Kidney Diseases

The UK Renal Data Collaboration (UKRDC) supports its members in improving patient care, conducting research, teaching and learning, running services, and enhancing quality and safety. The collaboration connects renal units, labs, registries, and other national data sources to collect and analyze data for better outcomes. With a secure server and fast, flexible software, the UKRDC enables effective data management and communication among healthcare professionals and patients. Collaboration with IT experts and industry partners ensures the expansion and success of this project.

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UK Renal Data Collaboration: Improving Care, Research, and Education in Kidney Diseases

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  1. UKRDC_UKRR_22052014n.ppx

  2. UK Renal Data Collaboration(UKRDC) UKRR Birmingham22 May 2014 Keith Simpsonmedical advisor to the UK Renal Registry keith.simpson@nhs.net

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

  4. UKRDC – draft structure UKRDC Website Board IT suppliers Terminology & coding Members Infrastructure Projects

  5. UK Renal Data Collaboration Supports its members to improve use of data to:1) Care for patients2) Research3) Teach & learn4) Run the services5) Quality & safety improvement

  6. UK Renal Data RenalUnits RPV Labs UKRR SRR RaDaR NHSBT BAPN OtherNational data .

  7. UK Renal Data Collaboration RenalUnits RPV Labs UKRR Warehouse SRR RaDaR10-20 gps NHSBT BAPN OtherNational data .

  8. UK Renal Data Collaboration RPV Regular meeting with the UKRDC members Data sets collected UKRR SRR RaDaR10-20 gps BAPN .

  9. UKRDC Data Model – bigger picture

  10. UK Renal Data Collaboration Secure server within N3 InterSystems software FastPowerfulFlexible Expandable Training Supported Translation engine – middle ware Supports SQL Warehouse .

  11. UK Renal Data Collaboration RenalUnits Presentations at RA Meetings Bournemouth & GlasgowBAPN annual Meeting – BirminghamSRR Meeting AyrClinical Directors Meeting – ManchesterWritten to all CDsarticles on RA website and UKRR newsletters Renal IT companies Plenary session BristolIndividual meetings at their offices .

  12. Communications:What 2 wayDiscussions with HSCIC – Leeds – SNOMED CT for diagnoses & proceduresRCP Health Info Unit – Clinical Document ArchitectureRoyal Col path – Lab results – NLMCWill include ability to send free textmeta data (when what how, ref range, assay used -possible HowEncryptedLoggedHL7 – possibly ‘FHIR’

  13. Request for a new lab test Send to Dr James Medcalf JM – Data set group of UK Renal Terminology Committee:Check it is new, get NLMC code, confirm meta data, publish on UKRDC websiteReply to request Send to Dr Jamie Traynor JT – Lead UKRDC Data groupConfigure storage, reporting, use in derived resultsAdd to UKRDC database in collaboration with IT experts & InterSystems

  14. National Laboratory Medicine Catalogue(cross referenced to SNOMED CT)

  15. Request for a new Diagnosis or Procedure Send to Dr Afzal Chaudhry AC – Diagnosis & Procedures groupUK Renal Terminology Committee:Check it is new, get SNOMED CT code, confirm semantic relationshipsPublish on UKRDC websiteReply to request Send to Dr Jamie Traynor JT – Lead UKRDC Data groupConfigure storage, reporting, use in derived resultsAdd to UKRDC database in collaboration with IT experts & InterSystems

  16. UK Renal Data Collaboration RenalUnits RPV Labs UKRR Warehouse SRR RaDaR10-20 gps NHSBT BAPN OtherNational data .

  17. An early project • D4D GrantEnabling patients to initiate medicine reconciliation via RPV

  18. 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 • Enabling our 5 functions • Support from Patients, Renal units, Renal IT Industry, NHS, Colleges

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