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2013 – The Sixteenth Annual Report
Welcome to the 2013 UK Renal Registry Report. It continues to be a tribute to the hard work of the renal community and to the Renal Registry itself. Last year, David Wheeler referred to the achievements of the Registry but cautioned against complacency. As the NHS in England goes through the biggest reorganisation since it’s formation so too the Registry and the renal community need to consider and perhaps adjust and develop their remit. That is already apparent as this report is the first to be published in the calendar year following data collection. For the teams that supply the data to the Registry that does mean an increased responsibility in assuring data completeness and quality freeing the Registry to devote energies to analysis and publication.
The NHS reorganisation also provides the stimulus to consider the role of the Registry. It certainly provides the clinical teams with an insight into the quality of care delivered within renal units but as yet the message for commissioners, patients and carers is not clear. The Francis report not only highlighted safety but also patient experience as key areas to understand and monitor.
So it is important that the Registry understands the needs of commissioners to assure the quality of the service that they commission. Aspects of those quality measures may be found within this report but there is a need to consider system level measures that have a global reach to understand quality within provision. Safety clearly is a major element within that and there is a need to develop safety measures within the dataset. It is gratifying to see a continued and sustained fall in MRSA bacteraemia but there is a need to move beyond this single measure and document harm events in more depth.
The Registry is now working closely with NHS England on completing pilots around patient experience and
outcome measures. These must be embedded into clinical practice in the way that systematic data collection has been achieved for laboratory data. These need to then develop into patient centred outcome measures that provide system level markers for both the users and the commissioners of the service to understand the quality of care.
Behind that, work continues to broaden data collection to include earlier stages of CKD into the remit of the Registry and consolidate RaDaR, the rare disease registry. The Registry is also a key partner in the newly established Acute Kidney Injury programme board, with the aim of significantly reducing the burden from AKI – a project set to run over 3 years.
It is also a time for wider collaboration. The Registry is also an important component of the National cardiovascular intelligence network, a far reaching project linking the cardiovascular disease headings into a health atlas for Public Health England.
Finally, there is the huge potential in the Registry to bridge the gap between randomised controlled trials and observation – (NEJM 369;17: 1579 Lauer et al.) and use the Registry as a registry based randomised trial. This may yield important benefit and be a valuable asset to the renal community.
Much has been delivered by the Registry over the twenty years since its inception. There is more to come and there is the challenge to widen the horizon.
Well done to everyone involved in the production of this report.
National Clinical Director (Renal), NHS England