What is the UK Renal Registry?
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 UK renal centres better than others in some aspects of care? The UK Renal Registry is helping to find out ...
The UKRR is part of the Renal Association, which is the main professional body for doctors working in kidney diseases in the UK. Its primary aim is to gather data centrally from all adult UK renal centres to improve the care of patients with kidney disease. Although originally limited to patients on renal replacement treatments (RRT) when their kidneys have stopped working – dialysis therapies and kidney transplant recipients – it now collects data for patients with kidney diseases at an earlier stage. This includes data on patients with sudden damage to the kidney due to various reasons (acute kidney injury) and people with gradually worsening kidney function (chronic kidney disease). This fuller picture of national kidney diseases will enhance the importance of the registry in providing summary data on the care of patients with kidney diseases. Furthermore, in recent years, data on children with kidneys disease has been added to the registry database.
The UKRR places great importance on its duties to maintain the confidentiality and security of patient data and is registered under the Data Protection Act. Transmission of data to the UKRR from each renal centre is protected by the latest secure encryption technology. Once analyses are completed, only summary data of groups of patients is presented to ensure that patients cannot be re-identified from the results. The UKRR is not required to obtain individual patient consent to use anonymised data, but patients do have the right to request that they be removed from any databases and analyses. More details on how patient data is used, including a privacy notice and details of how patients can opt out, are available on the UKRR website. This information is also provided via leaflets and posters distributed to all renal centres.
The many benefits of the work of the UKRR include identifying new trends in kidney diseases and the outcomes of patients, comparison of individual renal centre results to each other and national audit targets, and also to aid in research projects to improve the care of patients. It is crucial that the results are shared with as wide an audience as possible. While the main report is written primarily for a clinical audience, plain English summaries for each chapter are produced in collaboration with the UKRR patient council and are made available on the UKRR website. Appendix C of the Annual Report also gives a useful plain English guide to the key topics discussed in the report.
The UKRR Annual Report shows how renal centres are performing, and where performance is improving. Although the Report seems to show big differences between centres in important areas, for example, adequacy of dialysis and numbers of people starting dialysis, these do not necessarily mean that one centre is better than another. Where there are big differences between centres, a possible explanation may be slightly different ways of collecting data, or what we call ’case mix’ - for instance, some centres serve an older population, or more patients from ethnic minority backgrounds, and these factors can have an effect on the apparent performance against some standards. Historically, some variation within the Report in some of these areas has not necessarily represented differences in medical practice but represented 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 Renal Association publishes clinical practice guidelines which are derived by clinical experts from the latest available clinical evidence and can be found at https://renal.org/guidelines/. The UKRR Annual Report shows compliance with these 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 https://kdigo.org/guidelines/.
The main output from the UKRR is the Annual Report. This contains chapters on the: demographics of RRT (new patients starting that year and also total numbers); the 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; infection rates; ad hoc chapters focusing on a particular project or aspect of renal care 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.
How is the UKRR Annual Report funded?
Renal centres pay an annual capitation fee, for each patient (including children) on RRT whose data are submitted to the UKRR. Submission of data is a requirement of the National Service Framework for Renal Services. The UKRR is also commissioned to undertake specific projects and is awarded grants to further research into renal diseases that can use our database.
PatientView 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.patientview.org/). The day-to-day operation and management of the PatientView website is supported from within the UKRR.
PatientView is available from UK renal centres for their 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 UKRR – so if you suspect a mistake, you should check with your own centre. If you would like to know more speak with your local clinical team who will be able to provide you with more information on how to sign-up.
If you want to ask the UKRR any questions, email the Registry at firstname.lastname@example.org.
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.