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