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2016 – The Nineteenth Annual Report
I hope you enjoy reading the 2016 UK Renal Registry report compiled by the outstanding team at the registry. As a trainee starting out in nephrology in 1994 I have witnessed the incredible evolution of the registry from its inception under the auspices of the Renal Association. Conceived initially as a large scale audit of performance throughout the United Kingdom it continues to grow both in scope and influence. On the horizon are projects to report on episodes of acute kidney injury, low clearance care and conservative management. It is not only a very high quality database about kidney disease derived from 84 UK renal units but has evolved into a more proactive engine for change.
Examples of this transformation include:
• High quality research facilitated by the ability to collect huge volumes of data over many years manifested by a number of NIHR grants
• Setting up the Think Kidneys programme and pioneering quality improvement in nephrology by setting up KQUIP in partnership with NHS England
• Leading the UK Renal Data Collaboration
• Driving patient activation through PatientView and measurement of patient reported outcome measures
• Award-winning work on a AKI
When I had the chance to visit the registry I was impressed by the palpable commitment and enthusiasm of all the members of staff. They share a passion for the project which is infectious. There is a large team of data handlers, analysts, programmers, statisticians, business managers all sharing the same commitment to improve the lot of the four million people in the UK who have kidney disease.
Congratulations to Ron, Fergus, Retha, Karen and Hilary and the rest of the team on the continuing success of the endeavour.
Through the work of the Clinical Reference Group I have spent a lot of time over the past twelve months considering metrics of quality and it is clear that accurate contemporary data is the cornerstone of measuring performance. When I attend meetings with clinicians from other specialities I realise that the renal community is in a uniquely privileged position. For this we should all thank the vision of a handful of individuals who conceived the project more than twenty years ago and the continuing efforts of Ron’s team. If you want a definition of good value, then consider that the capitation cost of this service per patient is approximately a quarter of one haemodialysis session!
Finally I was reminded during my visit that the registry data set is a dynamic process and that the team are amenable to proposals. So, if you have an idea for new data that should be collected, or if you would like to use the registry database to facilitate data collection on a research project then get in touch and start a partnership.
Chair, Renal Services Clinical Reference Group