UKRDC_UKRR_22052014n.ppx

UK Renal Data Collaboration(UKRDC)

UKRR Birmingham22 May 2014

Keith Simpson

medical advisor to the UK Renal Registry

keith.simpson@nhs.net

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)

UKRDCWebsite

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

RenalUnits

UKRR

SRR

RaDaR

NHSBT

OtherNational data

BAPN

UK Renal Data

RPV

.

UK Renal Data Collaboration

Labs

RenalUnits

UKRR

SRR

RaDaR10-20 gps

NHSBT

OtherNational data

Warehouse

BAPN

RPV

.

UK Renal Data Collaboration

UKRR

SRR

RaDaR10-20 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

FastPowerfulFlexibleExpandableTrainingSupported

Translation engine – middle wareSupports SQL

.

UK Renal Data CollaborationRenalUnits

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 companiesPlenary session BristolIndividual meetings at their offices

Communications:What2 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’

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 websiteReply to request

Send to Dr James Medcalf

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

National Laboratory Medicine Catalogue(cross referenced to SNOMED CT)

Request for a new Diagnosis or Procedure

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 Afzal Chaudhry

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

RPV

.

UK Renal Data Collaboration

Labs

RenalUnits

UKRR

SRR

RaDaR10-20 gps

NHSBT

OtherNational 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