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