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2012 – The Fifteenth Annual Report
Welcome to the Renal Registry report for 2012. Although the renal community has become used to the annual publication of this document, we should not take it for granted. The huge effort that goes into production of the report places nephrology ahead of most other specialties in terms of national audit. We should be proud of what our registry has achieved in its short history. A recent article in the BMJ, which discussed publication of information on the performance of doctors and institutions since the Bristol inquiry into paediatric cardiac surgery, praised our efforts . Benchmarking against the achievements of the cardiothoracic surgeons, the author notes “so far, other specialities have been reluctant to follow suit” but goes on to state that “Nephrology is the notable exception”, describing how we publish our outcomes on adequacy of dialysis, haemoglobin and blood pressure to allow “clinical staff, commissioners and patients to . . . see how their renal centre is performing [against] specific national targets”. This culture of transparency is likely to be driven forward by public and patient pressure to improve quality of care in the light of the Francis enquiry.
In our speciality, we teach our patients to be interested in their “numbers” and to track these on Renal Patient View, but blood test results are often somewhat peripheral to the patient experience. The drive to collect patient reported outcome/experience measures (PROMs and PREMs) follows publication of a report entitled “High Quality Care for All – NHS Next Stage Review” by Lord Darzi. As usual, the Registry is ahead of the game and will shortly be conducting a pilot study to assess the feasibility and cost of collecting these measures in the dialysis population. Other Registry projects include collection of data in stage 4-5 CKD patients, which will allow us to gain a better picture of what happens to patients with end-stage kidney disease, particularly those who, for whatever reason, do not get offered or decline renal replacement therapy. The establishment of Renal RaDaR, the national registry for rare kidney disease, is progressing well and has already proven to be of value in supporting research projects. As these activities progress, we can look forward to a broader dataset being published in future the annual reports. We can also expect more timely reporting. According to current projections, we will also be seeing the 2013 report published before the end of this calendar year.
On behalf of the Renal Association, I would like to thank all those who have contributed towards collecting, processing, analysing and publishing the data contained in this 2012 report. This is, of course, a huge collaborative effort involving all renal units in the UK, but special thanks must go to the team in Bristol. The Registry has certainly come a long way in the last 20 years and we can expect some exciting times ahead.
President, Renal Association