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
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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
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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)
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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
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RPV
.
Labs
RenalUnits
UKRR
SRR
RaDaR
NHSBT
OtherNational data
BAPN
UK Renal Data
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RPV
.
UK Renal Data Collaboration
Labs
RenalUnits
UKRR
SRR
RaDaR10-20 gps
NHSBT
OtherNational data
Warehouse
BAPN
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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
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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
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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
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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
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Standards vs innovation
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Clinical termsget at the meaning of things –
‘semantic interoperability’
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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
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Clinical terms getting at the meaning of things – ‘semantic
interoperability’acetaminophen = paracetamol ~ Panadol ...
dm+d
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www.rcplondon.ac.uk/health-informatics-unit
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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
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mean for IT suppliersLots of worklittle reward BS&T
Business opportunities
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Lab data NLMC
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CDA is a Health Level 7 (HL7) standard www.cdc.gov/nhsn/CDA/
Ver 2 or 3
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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
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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
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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
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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
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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
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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
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http://www.theguardian.com/world/2013/sep/05/nsa-gchq-encryption-codes-security
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