Post on 31-Mar-2015
UK Renal Registry 2013 Annual Informatics Meeting
UK Renal Data Collection andInformation Model
1
Dr Keith Simpson, Medical Advisor UKRR Peter Nicklin, Business Analyst, HSCIC
Birmingham, 25 September 2013
National & regional Renal registries affiliated to the ERA EDTA
.
Individual patient data
Aggregated data
Survival of all RRT patients by PRDScottish renal units
November 2009
Mars Climate OrbiterNASA 1998
N s
Ft Lb s
Dr Alison Almond SRA 2008
UKRR Report 2011% HD patients with PTH within range (16 – 32 pmol/L
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
UK Renal Data Collaboration(UKRDC)
RPV
.
Labs
RenalUnits
UKRR
SRR
RaDaR
NHSBT
OtherNational data
BAPN
UK Renal Data
BAPN
RaDaR
Who sees the data
UK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
BAPN
RaDaRUK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
meta data
International Health Terminology Standards Development Organisation
.
BAPN
RaDaRUK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
EPRsSNOMED CTNLMCdm+d
meta data
BAPN
RaDaRUK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
EPRsSNOMED CTNLMCdm+d
granular datadata id GUID
meta data
BAPN
RaDaRUK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
EPRsSNOMED CTNLMCdm+d
standard messageseg FHIR
granular datadata id GUID
meta data
BAPN
RaDaRUK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
EPRsSNOMED CTNLMCdm+d
standard messageseg FHIR
granular datadata id GUID
intelligent validationreal time messagesdata ownership, provenance,governance
meta data
BAPN
RaDaRUK Renal Data
Collaboration
SRR
UK RR
RPV
Patient
Research and Audit
Renal Units
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS etc
NHSBT
EPRsSNOMED CTNLMCdm+d
standard messageseg FHIR
granular datadata id GUID
intelligent validationreal time messagesdata ownership, provenance,governance
meta data
home dialysisdrug reconciliationsymptom reporting
Quality in MedicineBristol was awash with data.
There was enough information from the late 1980s onwards to cause questions about mortality rates to be raised both in Bristol and elsewhere had the mindset to do so existed’
Prof Sir Ian Kennedy
The Bristol Royal Infirmary Inquiry. 2001
BrWsDif
Information Model
• Why have a model?• What the Model is and what it is not• What is in it?• State of Development
Why have a model?
• An orderly way of specifying information• Say things only once• Identify and understand the
relationships between things
Responsibility* *
Specify things only oncePerson
NameAddressTelephoneemail
PatientNHS noDoBSexEthnicityClinician
RegistrationTitleRole
Clinical Team
Team Name
Clinical Agent
Team Membership
**
**
Related Person
Why a Model?
Link things to each other
Model will link things: Dialysis & samples
Before dialysis starts
Patient id 7309276388Test requested U&ETime 08:17 25 Sep 13Sampler Nurse E McKayStage Pre dialysis
During dialysis
Patient id 7309276388Test requested U&ETime 10:58 25 Sep 13Sampler Nurse E McKayStage During dialysis
After dialysis
Patient id 7309276388Test requested U&ETime 13:26 25 Sep 13Sampler Nurse J PughStage Post dialysis
DialysisStart: 08:22 25 Sep 13End: 13:22 25 Sep 13
And as it appears in the modelclass UKRDC Relation to Dialysis
InvestigationResultItem
LaboratoryResultItem
Procedure
TakeSpecimen
RelationToDialysis
InvestigationResultItem
RadiologyReportItem
Procedure
RadiologyInv estigation
Values:
Pre-dialysisIntra-dialysisPost-dialysis
RenalTherapy
DialysisSessionBloodPressure
1..*1
1
0..*
0..*
1
1..*1
0..* 11 0..*
Linking: Observation as an outcome of a procedure
Patient id: 7309276388Procedure: dialysisTime: 13:26, 25 Sep 13
Outcome14:00, 25 Sept 13
Creatinine: 200 µmol/L
Linking: Drug Indication
IndicationArrythmia
PrescribeBeta blockers
Dr Brian SmithConsultant Nephrologist Glasgow Western Infirmary23 Sept 2013
The Model
• is intended to support the transmission of renal care data from Renal Units to the UKRDC data warehouse
• makes no assumptions about the technical nature of the UKRDC database or about the message method that may be adopted
Model Is Not
• It is not a database design• It is not a message design
What is in it: coverage• Peritoneal Dialysis and Haemodialysis
– Prescription– Session– Access
• Measurements– Lab– Image– Vital Signs (height, weight, BP etc.)
• Link Measurements Precisely to Dialysis (before, after etc.)
• Primary Renal Diagnosis and other diagnoses• Drugs• Basic Admission Discharge and Transfer (ADT)
What is in it: VocabulariesVA 91 – Removal Reason (i.e. Temporary
catheter)– Venous thrombosis– Use of alternative vascular access– Recovery of renal function– Switched to PD– Switched to HD– Renal transplantation– Accidental removal– As per Access complication
State of Development
• The model is not complete:– Scope (Transplant, Paediatrics, Genetics
etc.)– Need further verification
• However, even as it is, implementing its scope will take a lot of effort
• Do it in chunks
What could go wrong?
cry
http://www.theguardian.com/world/2013/sep/05/nsa-gchq-encryption-codes-security
BAPN
RaDaRUK Renal
Data Collaborati
on
SRR
UK RR
RPV
Quality Improvement
LABSLABS
LABS
Primary care –
prescribing etc
HES, RGOS
etc
NHSBT
Clinical care
TeachingLearning
Running service
Research