The Origins of the Renal Registry 

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The Origins of the Renal Registry 

by Christopher Winearls

The UK Renal Registry was the brainchild of Netar Mallick. He was made President of the Renal Association in 1990 (by the magic circle of eminent nephrologists and academics) when there was an argument within the organisation about whether it should involve itself in the politics of renal service provision which some believed to be the task of the Royal Colleges. The Committee on Renal Diseases of the London Royal College  of Physicians had been manifestly ineffective in responding to the pleas of clinical nephrologists that something must be done to fix the shameful lack of staff and facilities. Netar’s appointment was timely for he had vision, and wanted solutions. He had experience of the EDTA Registry and the difficulties being faced in the NHS, and he  immediately got to work. He set up three task forces– (i) workforce (ii) standards (iii) establishment of a registry. His goal was a registry better than the EDTA Registry. He reasoned that to persuade the Department of Health to increase funding, accurate data on incidence and prevalence of ESRF and the outcomes of dialysis and transplantation would be needed. We said our treatments worked but we had scant proof. A survey was done in three parts of the UK – Exeter, Manchester & Blackburn. In a paper in the BMJ in 1990 it was shown that RRT could justifiably be offered to 80pmp patients under 80 years of age Feest et al RRT requirement BMJ 1990. The actual rate was ~ 30pmp. The DoH  conceded it should be 40pmp. National data was now needed. Netar persuaded Terry Feest, by this time working in Bristol to take on the creation of the Registry. He  thought that the Transplant Registry already based in Bristol could help with hardware and experience.  Terry was an inspired choice. He was a computer expert, an outstanding nephrologist, very hard working and a “completer finisher.” He designed the business model, hired good software experts and above all got the directors of units on side by making data transfer automatic. But he also insisted that the data be accurate and that outlier units would be told of their performance. Later he persuaded units to agree to be identified by name not code. The reports were a godsend to clinical directors who were arguing for resources, setting their budgets, explaining the expansion to underserved areas; and it provided an “oven ready” audit report for the hospital clinical governance police. It allowed research into causes of ESRF, patient outcomes and their determinants, and the impact of variations in demographics e.g age and ethnicity. So successful has the registry been that many young nephrologists apply to conduct research or to work for it. Becoming the Clinical Director of the Renal Registry is a prestigious and much sought after role. Its design has matured but its fundamental differences from other registries make it stand out; these include digital data transfer, mandated national coverage, capitation funding, and unit identifiable reporting. It answers the questions clinicians  and health care planners want answered. But more than “big data” it is a driver for continuing service improvement.

This success was achieved by hard talking, hard work and hard bargaining. The take-on rate of new patients in the UK is now 145pmp. The nephrologists of today owe Mallick and Feest a salute.

Last Updated on February 27, 2024 by John Feehally