1. The National Renal Dataset Charlie Tomson UKRR Annual Meeting 24 th June 2009

2. The National Renal Dataset NRD applies to England only Designed to support implementation of NSF Initially designed to be collected through CfH systems Incorporates all items currently collected by UKT, BAPN, and UKRR, and some additional items

3. Evolution of the NRD Dataset items need to be approved as a ‘standard’ within the NHS Draft operational standard submission to Information Standards Board March 2007 –Approved –Required evidence that additional data items had been explicitly piloted Dataset Change Notice issued Dec 2008 by CfH on behalf of DH

4. Implementation testing Vascular access; Peritoneal access, Viral serology 3 systems (PROTON, Mediqal, Vitaldata) –Leeds, Bradford, Bristol, Exeter, Norwich, Brighton, Derby

6. What the NRD is and is not IS – an ‘output specification’ –Contains both items directly extracted from the care record and items that can be derived after extraction NOT – a ‘technical specification’ –Allows for collection in different IT systems –Does not predetermine the logical structure of the database in a given IT system

7. What does ‘mandatory’ mean? For Trusts: –DH requirement that TRUSTS implement systems that allow data collection and extraction –And if necessary pay for software upgrades –Likely that failure to do so will (eventually) result in sanctions (not defined) For UKRR/UKT: –Expectation that all new data items will be analysed and reported

8. Which organisation collects which items? UKRR: all existing adult and paediatric items, plus vascular and peritoneal access, new prescribed items UKT: transplant-related items HES: administrative items (e.g. hospital stay)

13. Items dropped since DSCN Osteoporosis/DEXA scores Antihypertensive drug treatment Post-dialysis Hb and [creatinine] Malignancy EDTA code HbA1c and Albumin assay details Clinical trial status indicator (BAPN)

14. Administrative items Items currently held on Patient Administration Systems but not on renal systems, e.g. –Dates of admission and discharge –Consultant code –Dates of outpatient appointments To be collected (as at present) within HES Record linkage by CSC – Information Centre seeking permissions

15. Malignant disease Many malignancies in patients receiving RRT are diagnosed and managed in Trusts other than the renal centre Recording of malignancy within renal IT systems likely to remain incomplete and biased Continue to record h/o malignancy at start of RRT within renal IT systems Record linkage to National Cancer Intelligence Network (Cancer Registries) to be sought

16. Osteoporosis NRD not designed to drive clinical practice; use of DEXA scans variable Interpretation of DEXA scans difficult in kidney disease due to aortic calcification Incidence of fracture might be captured by record linkage with HES Plans to record diagnosis of osteoporosis and/or DEXA scores within mandatory NRD dropped

17. Antihypertensive drug Rx Would require either –Clinicians to enter yes/no (and keep updated), or –Reliable recording of current prescribed medications irrespective of where prescribed Unlikely to be feasible within current renal IT systems in adult practice Dropped from mandatory dataset

18. PD dose, transport characteristics Retained as mandatory items To be included in data extract from renal IT systems –Raw data rather than derived variables required –Peritoneal Dialysis Database could be used to populate data extract?

19. Items mandated from 2011 Residual renal function, PD peritonitis, HD dialysate flow rate – UKRR Height and weight – UKRR HDL/LDL-C, red cell folate, TSAT, Alk Phos, etc - UKRR Smoking status – UKRR, UKT? Surgical procedures – HES Recurrent renal disease - UKT

20. Benefits for kidney patient care? Mandation = obligation on Trusts to support renal IT systems until such time that all data can be captured reliably within ‘main hospital’ systems More complete datasets = enhanced ability to perform valid case-mix adjusted analyses of variations in outcome Understanding of variation drives improvement

21. Thank you