UK Renal Data Collaboration UKRR Audit Day 25 June 2013

Involves Registries (UKRR & SRR) RPV Rare renal disease groups Patients Renal Association Renal units Renal IT industries Data Governance NHS, HSCIC, DoH, ISD UK Renal Data Collaboration

Governance & Risks Guiding Coalition Met in Edinburgh Nov 2012, 2 nd Meeting soon Chair Dr Afzal Chaudhry Position paper available Risk Register

Can we develop a project that better supports what we do: Care for patients data and info for patients Research basic and epidemiology, traditional & novel Teach & learn Run the services Quality improvement units could devolve some QI to the registries prompts (Tx list), trends (infections)... UK Renal Data Collaboration

. Renal Units

. UK Renal Data Collaboration Labs Renal Units

. UK Renal Data Collaboration Labs Renal Units NHSBT Other National data

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

hard to manage wasteful summarised data can’t be recovered perpetuates errors some unknown >> bias eg RRT start date & unit lost in transfer inflexible …

RPV. Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient sees~all their data BAPN UK Renal Data Collaboration

RPV. Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data Warehouse Patient moves renal unit BAPN UK Renal Data Collaboration

RPV. UK Renal Data Collaboration Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data HES, RGOS... Warehouse BAPN other ukrdc_it_09b Primary care eg drug prescription Warehouse data viewable NHS net firewall

Prerequisites: Use 1) NHS and CHI numbers for patient id 2) real time comprehensive electronic records 3) national & international terminologies SNOMED CT, DM&D, eBNF, NLMC 4) information standards eg FHIR from HL7 Need firm lead from RAs and CDs Relevant to clinical governance if we hope to use IT to address eg CV catheter infection UK Renal Data Collaboration

Clinical terminology – SNOMED CT UK Renal Terminology Committee Membership and expert Guidance from Professional Terminologists from HSCIC UK Renal diagnosis subset Good links with ERA-EDTA Need good SNOMED CT interface in Renal Units (paper to be issued by HSCIC) Hospitals not encouraging use ?because paid by ICD9/10 No Teaching about it in Universities, Colleges and Professional associations

National Laboratory Medicine Catalogue (cross referenced to SNOMED CT)

PTH urate, Hb

UK Renal Data Collaboration Information Model 17 Presented by Peter Nicklin, HSCIC, 7 th June 2013

UKRDC Data Model – big picture

UKRDC Data Model – bigger picture

UKRDC Data Model – some headings

External Collaboration 1) UK Renal IT suppliers 2) Health and Social Care Information Centre member of renal terminology committee SNOMED CT, Drugs Medicines & Devices data model data transfer scheme advice on warehouse 3) Royal College of Pathologists & DoH NLMC 4) Senior trainee interested in participating

RPV. UK Renal Data Collaboration Labs Renal Units UKRR SRR RaDaR ?10-20 gps NHSBT Other National data HES, RGOS... Warehouse BAPN other ukrdc_it_09b Primary care eg drug prescription Warehouse data viewable NHS net firewall