This page describes how kidney patients’ data are used by the UK Kidney Association (UKKA).
For more detail, patients can also read the UK Kidney Association's privacy notice.
UK Renal Registry (UKRR)
When patients visit a hospital to receive kidney treatment, the staff who treat the patient will collect information about them, their general health and their past care and medications. This clinical data is what allows the medical team to make decisions about how to best treat and take care of those patients.
To ensure that all kidney patients across the country are getting the highest quality of care possible, the NHS requires hospitals to submit the data collected by hospital staff to the UK Renal Registry (UKRR) where the data are analysed and used to do the following things.
Each year, the UKRR creates reports that show how each kidney centre or hospital has performed in treating patients with kidney disease compared to the standards that have been set by the NHS. To produce these reports, patient data are processed through the following steps.
- Collection – local hospital IT systems collect and store information on patients with kidney disease. The hospital then sends, via secure email, a pre-determined set of data about each patient to the UK Kidney Association who store it securely in the UKRR’s database.
- Validation – the UKRR runs the data through a series of specialist computer programmes which check that the data are accurate. Where errors are found, the UKRR will ask the hospital to correct it.
- Linkage – the cleaned data are linked with data from the informatics services. This involves sharing the NHS number of each patient with the informatics service, and requesting that the service sends back data they currently hold for that patient.
- Analysis – patient identifiers are removed from the data and sent to the UKRR’s statistics team for analysis. These analyses produce a series of tables and graphs showing how each hospital has performed against the standards set by the NHS.
- Publication – the results of the analyses are put together into a report which explains what each table and graph means. Once complete, the report is published online and hardcopies sent to senior NHS staff.
The information published in the UKRR’s reports is also available via an online data portal where patients and clinical staff can more easily compare renal centres and access the information that is important to them.
The UKKA works with kidney centres in the UK to identify areas where the quality of patient care can be improved and help implement projects that will achieve these improvements. The success of the quality improvement programmes is measured by the data collected by the kidney centres compared to the data processed by the UKRR for audit purposes. More information on the work done by the UKKA’s quality improvement team can be found here.
The data that are collected and validated for the UKRR’s audit are also included in a research database hosted by the UKRR. This database is used to support research into kidney disease. Researchers either employed by the UKKA or based in hospitals and universities across the UK can apply to access data from the database so that they can carry out their research. The data is only released for ethically approved projects and where the researcher can prove that they will use the data responsibly and securely, in line with data protection law. Examples of the sort of research that has used data supplied by the UKRR can be found on the research pages of the UKKA website.
The UKKA understands that not all patients will be comfortable with their personal and medical data being used for purposes that aren’t directly linked to their healthcare. Because of this should patients wish to do so, they have the ability to opt-out of having their data collected and sent to organisations such as the UKRR.
Patients who wish to opt-out of having their identifiable data included in the UKRR’s audit work should inform the UKRR via: email@example.com This address can also be used should patients have any concerns or queries about how patient data is used. Patients should also inform the clinical team at the hospital where they are receiving treatment of their wish to opt-out.
As of April 2023, patients can no longer opt-out of being included in the UKRR’s audits of kidney replacement therapy (dialysis and/or transplant) or acute kidney injury (AKI) via the National Data Opt-out (NDO) program run by NHS Digital. This exemption was granted by the Department of Health and Social Care. Patients can continue to opt-out as described above.
For more information about the UKRR’s work and how to opt-out, the UKRR has produced a patient information leaflet, available here.
National Registry of Rare Kidney Diseases (RaDaR)
The National Registry of Rare Kidney Diseases (RaDaR) is a research database allowing the UKKA and researchers around the UK to study rare kidney diseases.
Patients with rare kidney conditions can consent to participate in RaDaR, have information about their health collected and included in the database, as well as agree to receive information about research projects they might want to participate in.
More information about the rare diseases studied via RaDaR and about the database itself can be found Rare Renal pages.
Electronic Patient Records
The UKKA supports hospitals in providing data into Electronic Patient Records such as Patients Know Best by collecting data from the kidney centres and transferring it onto the electronic patient record. More information about the UKKA’s work with Patients Know Best can be found here.