This page describes how kidney patients’ data are used by the Renal Association.
For more detail, patients can also read the Renal Association’s privacy notice.
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 where the data are analysed and used to do the following things.
Each year, the UKRR creates reports that show how each renal 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 Renal 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 RA works with renal 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 renal centres compared to the data processed by the UKRR for audit purposes.
The data that are collected and validated for the UKRR’s audit are also included in a research database hosted by the registry. This database is used to support research into kidney disease. Researchers either employed by the RA 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 RA website.
Patients can sign up to PatientView to view their clinical test results and other parts of their digital medical record. The data on PatientView is sent from the renal centres on a daily basis to the UKRR to support its audit work. The data sent from the renal centres is then uploaded to the webserver which PatientView is run from and where patients can log on to view their results.
The NHS 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, the NHS allows patients who wish to, the ability to opt-out of having their data collected and sent to organisations such as the UKRR.
Patients can opt-out of their data being used beyond their direct care in one of two ways.
First, patients can talk to the staff at the hospital where they are being treated, requesting to opt-out. The hospital should then stop sending data to organisations such as the UKRR. The procedure for how these requests are handled may vary between hospitals, so patients should make sure that they speak to staff there about what is required.
Alternatively, patients can opt-out online via a website hosted by the NHS: https://www.nhs.uk/your-nhs-data-matters/. When visiting this website, patients can decide how they would like their data to be used, including the ability to opt-out of the data being used at all. Once set, a patient’s preferences are sent to the places where the patient is cared for, e.g. hospital and/or GP clinic, who are then required to ensure that the patient’s data are not passed on.