How is Your Renal Unit doing?
How is Your Renal Unit doing?Have you ever wondered if the performance of your own renal centre is as good as you and the professionals in your centre want? Are some Renal Centres in the UK better than others in some aspects of care? Well, the UK Renal Registry is helping to find out.
The primary intention of the UK Renal Registry is to carefully monitor the quantity and quality of renal care in the UK, and thus to improve the quality and efficiency of this care. The Registry provides an Annual Report to facilitate this process. The Report enables internal audit within renal centres, allow centres to compare themselves to other centres, and provide information to stimulate and inform the process of improving patient care.
The UK Renal Registry is part of the pioneering work of the Renal Association. The Renal Association is the main professional body for doctors working in kidney diseases in the UK. The Renal Association holds scientific meetings, and has set standards for the care of people with kidney diseases. The audit and research work of the UK Renal Registry is essential to implementing those standards.
The Registry collects information from renal centres and compares take-on rates for dialysis, death rates, haemoglobin levels and lots of other outcomes. The majority (99%) of Renal Centres contribute data and work is in hand to make this 100% coverage. The information is published on http://www.renalreg.org/. Each centre is identified by name in the Annual Report, so you can see how your centre is doing. Please feel free to browse this but bear in mind that it is written primarily for a professional audience. Appendix C of the 2008 Annual Report gives a useful guide to key topics in renal medical care.
To mark the 2009 World Kidney Day, The UK Renal Registry launched the world’s first interactive maps showing details of achievement of quality measures in the care of dialysis patients in kidney centres. The maps allow clinical staff, commissioners and patients to obtain details about a selected topic, to see how their renal centre is performing and how well any centre is achieving specified national targets. The interactive maps cover England, Wales and Northern Ireland, with Scotland being added soon. Other information, such as general population data and additional quality indicators, will also be added (www.renalreg.com).
The Report shows how centres are performing, and where performance is improving. Although the Report seems to show big differences between centres in important areas — adequacy of dialysis, numbers of people starting dialysis, for example — these do not necessarily mean that one centre is better than another. Where there are big differences between centres, a possible explanation is not poor performance, but slightly different ways of collecting data, or what we call ‘case mix’ – for instance, some centres serve more older patients, or more patients from ethnic minority backgrounds, and these factors can have an effect on the apparent performance against some standards. Some centres may also have financial resource limitations restricting, for example, take-on rates and erythropoietin prescribing. The variation within the Report in some of these areas may not represent differences in medical practice but differences in available resources. The data in the Report have therefore been valuable in contract negotiations between renal centres and commissioners of renal services.
The UKRR is a registered charity and part of the Renal Association (www.renal.org). It is based in Bristol, and employs a number of staff, among who are a full-time medically qualified Director, a general manager, a project manager, a secretary, statisticians, Specialist Registrars on out-of-programme experience, and data managers. The Registry published its 11th Annual Report (on patients receiving RRT in 2007) in March 2009. The primary purpose of the Report is to drive up the quality of care of patients with kidney failure.
Renal centres pay an annual capitation fee, for each patient (including children) on RRT whose data are submitted. Submission of data is a requirement of the National Service Framework for Renal Services (www.dh.gov.uk/en/Healthcare/NationalServiceFrameworks/Renal/RenalInformation/DH_4102636).
The UKRR is fully electronic, and — nearly uniquely — relies on data extracted directly from electronic patient records used in the day to day care of patients on RRT. The ability of the UKRR to collect quarterly laboratory data is unique amongst national renal registries. Each quarter, an encrypted data extract is sent from each system to the UKRR. A large number of validation, completeness, and error checks are then performed to detect logical inconsistencies in the data and unexpected changes in data items compared to previous extracts. The statistical analyses are then interpreted by a team of clinicians and epidemiologists and prepared for publication.
The Renal Association first published Standards of Care for the treatment of patients with RRT in 1995. In 2007, the Renal Association decided to rename these standards as Clinical Practice Guidelines and to develop and expand their contribution to patient care and to issue them as a series of ‘modules’. The modules cover a wider range of topics than the previous ‘Standards’ document with the addition of a section on Chronic Kidney Disease and extended coverage of the medical aspects of kidney transplantation, particularly recipient work-up (www.renal.org).
Each module comprises a series of guideline statements with accompanying text to explain how these are derived. The supporting evidence is referenced and audit measures defined. The UK Renal Registry Report shows compliance with the Guidelines across renal centres. The current UK guidelines can also be compared with those produced by other organisations across the world on the Kidney Disease: Improving Global Outcomes (KDIGO) website http://www.kdigo.org/.
The main output from the UKRR is the Annual Report. This contains chapters on the demographics of Renal Replacement Therapy (new patients starting that year and also total numbers), late presentation and co-morbidity; chapters on achievement of clinical performance measures (e.g. the amount of dialysis, correction of anaemia, control of calcium and phosphate in the blood); access to, and outcome of, kidney transplantation (in collaboration with NHS Blood and Transplant); survival (adjusted for age, and, where the data are available, for co-morbidity); RRT in children; and international comparisons. Each of these chapters contains not only data on the UK population as a whole, but also contains named centre-specific analyses, so that each centre can compare its performance with every other centre in the UK.
Whilst the Annual Report includes the names of the renal centres, this does not mean that any individual patient can be identified in the Report. No data are published about individual patients, only for groups of patients in each centre. The UK Renal Registry is registered under the Data Protection Act.
National planning of renal services by the Department of Health and allocation of local renal resources relies on the returns of total patient numbers provided by the Registry to regional purchasers. Accurate take-on rates for regions, and centre survival statistics can only be produced if all patients agree to allow their data to be included in the Registry.
The UK Renal Registry does not release individual patient data to any external body. Transmission of data to the Registry from each renal centre is protected by the latest secure encryption technology.
Renal Patient View is a project devised by a group representing renal patients and the renal team. It provides secure access to online information about your diagnosis, treatment, and your latest test results. As a patient you can decide yourself whether to share your own information with anyone (by sharing your unique password), and you can also view it from anywhere in the world (www.renalpatientview.org/). The day-to-day operation and management of the Renal Patient View web-site is supported from within the Registry.
Renal Patient View is currently only available from some UK renal centres, and for patients who have signed a consent form to participate. The information comes directly from the clinical database held within your renal centre, not from the UK Renal Registry – so if you suspect a mistake, you should check with your own centre.
NHS Choices has a section on its website which also uses information produced by the UKRR to enable you to see how your renal centre is performing and an explanation of what the various measures mean.
To access the site, click on: www.nhs.uk/Pathways/Kidneydisease/Pages/Landing.aspx. This takes you to the main page for NHS Choices about kidney disease.
If you then navigate to ‘Treating kidney disease’ on that page, you will be invited to put in a postcode. If you put in, for example, a Bristol postcode, you then get a page that tells you that your local renal centre is Southmead Hospital.
If you then scroll down that page, you get some indicators of the primary care management of blood pressure, and below that there are a series of boxes on:
If you want to ask the Registry any questions, email the Registry at renalreg@renalreg.com.
NKF Controlled Document No. 181, How is Your Renal Unit doing?, written 20 August 2002. Last reviewed 14 April 2009.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.
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Page created: 20 August 2002
Last updated: 29 April 2009