One condition of being granted secondary use approvals is that organisations must allow patients to opt-out of having their confidential information shared and processed. Kidney patients in the UK can opt-out by informing the hospital where they’re being treated. It is then each hospital's responsibility to ensure that its patients' wishes are met. Patients in England can also opt-out using the National data opt-out programme run by NHS Digital.

To facilitate this, while maintaining the accuracy and validity of its audit function, the RA asks renal centres and submitting acute laboratories in England, to de-identify patient records for opted-out patients prior to submission. The de-identified data will only be processed for the purposes of basic audit, and will not be included in linked datasets or any data processed for the purposes of research.

The RA’s full policy on patient opt-out can be found here.

Guidance for organisations submitting data to the UKRR to de-identify patients for submission can be found here.

Information for patients:

patient privacy notice, opt-out leaflet and poster.