3 Existing Building Blocks for Continuous Quality Improvement

3.1 Renal Association Clinical Standards
3.2 The UK Renal Registry
3.3 NHS Initiatives

3.2 The UK Renal Registry

The UK Renal Registry was established by the Renal Association with support from the Department of Health, the British Association for Paediatric Nephrology and the British Transplant Society. It has close links with the Scottish Renal Registry which was established with financial support from the Scottish Office and was one of the first Registries to demonstrate the practicalities of automated data collection. Whilst the initial development of the Registry was financed by grants from the Department of Health and from industry, continuing activity is largely funded through payment by participating renal units of an annual fee per patient registered. In this way it remains an independent source of data and of analysis of national activity in renal disease.

For 20 years many renal units have enjoyed local systematic sequential data collection using clinical computing systems. The potential for electronic downloading of data was recognised by the UK Registry Committee and the UK Registry is unusual in automated collection of sequential quarterly data. Such data includes adequacy of dialysis, haemoglobin, blood pressure and many biochemical variables such as serum albumin, phosphate and cholesterol. The Registry data can help identify reasons for any variations in achieving targets and standards between different units, hence improving practice and generating hypotheses for further investigation. It was apparent during the development of the Standards document of the Renal Association that the evidence base subtending many of the standards was lacking. Evidence from trials and systematic reviews that limit bias are being used to establish standards. Data from the registry are also important along with studies of targets reached in other countries where factors such as greater resource input may lead to better patient outcome.

The audit and research work of the Registry is essential for 'closing the audit loop' and implementing the recommendations of the Renal Association Standards document. Few, if any, other medical specialities enjoy this facility which makes renal medicine unique in its suitability for automated audit and setting standards of care. In just two years the proportion of the adult population of RRT covered by the UK Registry has grown from 16% to well over 50% and all of Scotland is included. The 1999 report presents data from 15,000 patients on RRT(ref.1). One of the central recommendations of this Kidney Alliance document is that all renal centres and satellites should be linked to the renal registry over a relatively short timescale (see Section 6).