ukrdc_ks_ukrr_informatics_nn_25092014.ppx. uk renal data collaboration (ukrdc) what does it mean for...

UKRDC_KS_UKRR_informatics_nn_25092014.ppx

UK Renal Data Collaboration(UKRDC)

What does it mean forThe 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

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)

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

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

Websitewww.rixg.org.uk

BoardMembers

professional & patients

IT suppliers

Terminology, codes, dataset

Diagnoses & Procedures

SNOMED-CT

Lab TestsNLMC

Link with HSCIC

InfrastructureHardware,

software, comms

Projects

UKRDC – structure

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

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

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

Standards vs innovation

Clinical termsget at the meaning of things –

‘semantic interoperability’

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 similarusing the wrong abbreviation. eg RTA, BG, BM, MI ...

$77 billion in extra costs Starfield B., JAMA 26 July 2000; 284(4):483-5

Clinical terms getting at the meaning of things – ‘semantic

interoperability’acetaminophen = paracetamol ~ Panadol ...

dm+d

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

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

mean for IT suppliersLots of worklittle reward BS&T

Business opportunities

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

Sept 2013

Lab data NLMC

CDA is a Health Level 7 (HL7) standard www.cdc.gov/nhsn/CDA/

Ver 2 or 3

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

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

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

Quality Improvement

Collect any data – and make sense of of it because meta data

Linking to external data sets –

analyse in novel waysoffer new services to patients and renal units eg

decision supportoutcome predictiontrend spotting

research hubs,collaboration with non medical university departments and industry

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

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

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