UKRDC_UKRR_ n.ppx

UK Renal Data Collaboration (UKRDC) UKRR Birmingham 22 May 2014 Keith Simpson medical advisor to the UK Renal Registry

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 UK Renal Data Collaboration(UKRDC)

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

Supports its members to improve use of data to: 1) Care for patients 2) Research 3) Teach & learn 4) Run the services 5) Quality & safety improvement UK Renal Data Collaboration

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

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

RPV. UK Renal Data Collaboration UKRR SRR RaDaR gps BAPN Regular meeting with the UKRDC members Data sets collected

UKRDC Data Model – bigger picture

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

. UK Renal Data Collaboration Renal Units Presentations at RA Meetings Bournemouth & Glasgow BAPN annual Meeting – Birmingham SRR Meeting Ayr Clinical Directors Meeting – Manchester Written to all CDs articles on RA website and UKRR newsletters Renal IT companies Plenary session Bristol Individual meetings at their offices

Communications: What 2 way Discussions with HSCIC – Leeds – SNOMED CT for diagnoses & procedures RCP Health Info Unit – Clinical Document Architecture Royal Col path – Lab results – NLMC Will include ability to send free text meta data (when what how, ref range, assay used - possible How Encrypted Logged HL7 – possibly ‘FHIR’

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

National Laboratory Medicine Catalogue (cross referenced to SNOMED CT)

Request for a new Diagnosis or Procedure AC – Diagnosis & Procedures group UK Renal Terminology Committee: Check it is new, get SNOMED CT code, confirm semantic relationships Publish on UKRDC website Reply to request Send to Dr Afzal Chaudhry Send to Dr Jamie Traynor JT – Lead UKRDC Data group Configure storage, reporting, use in derived results Add to UKRDC database in collaboration with IT experts & InterSystems

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

An early project D4D Grant Enabling patients to initiate medicine reconciliation via RPV

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