The National Renal Dataset

Charlie Tomson

UKRR Annual Meeting

24th June 2009

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

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

Implementation testing

• Vascular access; Peritoneal access, Viral serology

• 3 systems (PROTON, Mediqal, Vitaldata)– Leeds, Bradford, Bristol, Exeter, Norwich,

Brighton, Derby

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

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

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)

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)

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

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

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

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

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?

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

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

Thank you