UK Renal Registry 2013 Annual Informatics Meeting
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1 UK Renal Registry 2013 Annual Informatics Meeting UK Renal Data Collection and Information Model Dr Keith Simpson, Medical Advisor UKRR Peter Nicklin, Business Analyst, HSCIC Birmingham, 25 September
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5 National & regional Renal registries affiliated to the ERA EDTA Individual patient data Aggregated data.
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9 Survival of all RRT patients by PRD Scottish renal units November 2009
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14 Mars Climate Orbiter NASA 1998
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18 Dr Alison Almond SRA 2008
19 UKRR Report 2011 % HD patients with PTH within range (16 32 pmol/l
20 UK Renal Data Collaboration (UKRDC) 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
21 Renal Units UK Renal Data RPV Labs UKRR SRR RaDaR NHSBT BAPN Other National data.
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24 Who sees the data LABS LABS LABS RPV Patient UK RR Renal Units SRR NHSBT HES, RGOS etc UK Renal Data Collaboration RaDaR BAPN Primary care prescribing etc Research and Audit
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26 Renal Units meta data LABS LABS LABS RPV Patient UK RR SRR NHSBT HES, RGOS etc UK Renal Data Collaboration RaDaR BAPN Primary care prescribing etc Research and Audit
27 International Health Terminology Standards Development Organisation
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33 Renal Units EPRs SNOMED CT NLMC dm+d meta data LABS LABS LABS RPV Patient UK RR SRR NHSBT HES, RGOS etc UK Renal Data Collaboration RaDaR BAPN Primary care prescribing etc Research and Audit
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36 Renal Units EPRs SNOMED CT NLMC dm+d meta data LABS LABS LABS RPV Patient granular data data id GUID UK RR SRR NHSBT HES, RGOS etc UK Renal Data Collaboration RaDaR BAPN Primary care prescribing etc Research and Audit
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38 Renal Units EPRs SNOMED CT NLMC dm+d meta data LABS LABS LABS RPV Patient granular data data id GUID UK RR standard messages eg FHIR SRR NHSBT HES, RGOS etc UK Renal Data Collaboration RaDaR BAPN Primary care prescribing etc Research and Audit
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40 Renal Units EPRs SNOMED CT NLMC dm+d meta data LABS LABS LABS RPV Patient granular data data id GUID UK RR standard messages eg FHIR SRR NHSBT HES, RGOS etc Primary care prescribing etc UK Renal Data Collaboration intelligent validation real time messages data ownership, provenance, governance RaDaR BAPN Research and Audit
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43 Renal Units EPRs SNOMED CT NLMC dm+d meta data LABS LABS LABS RPV granular data data id GUID UK RR standard messages eg FHIR Patient home dialysis drug reconciliation symptom reporting SRR NHSBT HES, RGOS etc Primary care prescribing etc UK Renal Data Collaboration intelligent validation real time messages data ownership, provenance, governance RaDaR BAPN Research and Audit
44 Quality in Medicine Bristol 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 BrWsDif
45 Information Model Why have a model? What the Model is and what it is not What is in it? State of Development
46 Why have a model? An orderly way of specifying information Say things only once Identify and understand the relationships between things
47 Specify things only once Person Name Address Telephone Clinical Agent Clinician Registration Title Role * Clinical Team Team Name * * Team Membership * Related Person Responsibility * * Patient NHS no DoB Sex Ethnicity
48 Why a Model? Link things to each other
49 Model will link things: Dialysis & samples Patient id Test requested U&E Time 08:17 25 Sep 13 Sampler Nurse E McKay Stage Pre dialysis Before dialysis starts During dialysis Dialysis Start: 08:22 25 Sep 13 End: 13:22 25 Sep 13 After dialysis Patient id Test requested U&E Time 10:58 25 Sep 13 Sampler Nurse E McKay Stage During dialysis Patient id Test requested U&E Time 13:26 25 Sep 13 Sampler Nurse J Pugh Stage Post dialysis
50 And as it appears in the model class UKRDC Relation to Dialysis Procedure InvestigationResultItem TakeSpecimen LaboratoryResultItem 1 1..* 1 0..* BloodPressure RenalTherapy RelationToDialysis 1 0..* DialysisSession 0..* 1 0..* Values: Procedure RadiologyInv estigation InvestigationResultItem 1 1 RadiologyReportItem 1..* Pre-dialysis Intra-dialysis Post-dialysis
51 Linking: Observation as an outcome of a procedure Outcome Patient id: Procedure: dialysis Time: 13:26, 25 Sep 13 14:00, 25 Sept 13 Creatinine: 200 µmol/l
52 Linking: Drug Indication Arrythmia Indication Dr Brian Smith Consultant Nephrologist Glasgow Western Infirmary 23 Sept 2013 Prescribe Beta blockers
53 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
54 Model Is Not It is not a database design It is not a message design
55 What is in it: coverage Peritoneal Dialysis and Haemodialysis Measurements Prescription Session Access 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)
56 What is in it: Vocabularies VA 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
57 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
58 What could go wrong?
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68 Clinical care LABS LABS LABS RPV UK RR SRR NHSBT HES, RGOS etc Primary care prescribi ng etc Running service UK Renal Data Collaborati on Teaching Learning RaDaR BAPN Quality Improvement Research
The new ERA-EDTA PRDs UK Renal SNOMED CT subset TheProject
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