UK Renal Registry 2013 Annual Informatics Meeting UK Renal Data Collection and Information 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 PRD Scottish renal units November 2009

Mars Climate Orbiter NASA 1998

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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 Renal Units UKRR SRR RaDaR NHSBT Other National 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 LABS Primary care – prescribing etc HES, RGOS etc NHSBT

BAPN RaDaR UK Renal Data Collaboration SRR UK RR RPV Patient Research and Audit Renal Units LABS Primary care – prescribing etc HES, RGOS etc NHSBT meta data

International Health Terminology Standards Development Organisation

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BAPN RaDaR UK Renal Data Collaboration SRR UK RR RPV Patient Research and Audit Renal Units LABS Primary care – prescribing etc HES, RGOS etc NHSBT EPRs SNOMED CT NLMC dm+d meta data

BAPN RaDaR UK Renal Data Collaboration SRR UK RR RPV Patient Research and Audit Renal Units LABS Primary care – prescribing etc HES, RGOS etc NHSBT EPRs SNOMED CT NLMC dm+d granular data data id GUID meta data

BAPN RaDaR UK Renal Data Collaboration SRR UK RR RPV Patient Research and Audit Renal Units LABS Primary care – prescribing etc HES, RGOS etc NHSBT EPRs SNOMED CT NLMC dm+d standard messages eg FHIR granular data data id GUID meta data

BAPN RaDaR UK Renal Data Collaboration SRR UK RR RPV Patient Research and Audit Renal Units LABS Primary care – prescribing etc HES, RGOS etc NHSBT EPRs SNOMED CT NLMC dm+d standard messages eg FHIR granular data data id GUID intelligent validation real time messages data ownership, provenance, governance meta data

BAPN RaDaR UK Renal Data Collaboration SRR UK RR RPV Patient Research and Audit Renal Units LABS Primary care – prescribing etc HES, RGOS etc NHSBT EPRs SNOMED CT NLMC dm+d standard messages eg FHIR granular data data id GUID intelligent validation real time messages data ownership, provenance, governance meta data home dialysis drug reconciliation symptom reporting

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

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 once Person Name Address Telephone Patient NHS no DoB Sex Ethnicity Clinician Registration Title Role 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 Test requested U&E Time 08:17 25 Sep 13 Sampler Nurse E McKay Stage Pre dialysis During dialysis Patient id Test requested U&E Time 10:58 25 Sep 13 Sampler Nurse E McKay Stage During dialysis After dialysis Patient id Test requested U&E Time 13:26 25 Sep 13 Sampler Nurse J Pugh Stage Post dialysis Dialysis Start: 08:22 25 Sep 13 End: 13:22 25 Sep 13

And as it appears in the model

Linking: Observation as an outcome of a procedure Patient id: Procedure: dialysis Time: 13:26, 25 Sep 13 Outcome 14:00, 25 Sept 13 Creatinine: 200 µmol/L

Linking: Drug Indication Indication Arrythmia Prescribe Beta blockers Dr Brian Smith Consultant Nephrologist Glasgow Western Infirmary 23 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: 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

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?

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p1 06 Sept 2013

BAPN RaDaR UK Renal Data Collaborati on SRR UK RR RPV Quality Improvement LABS Primary care – prescribi ng etc HES, RGOS etc NHSBT Clinical care Teaching Learning Running service Research