Patients and the public
People living with kidney disease help shape the work of the UK Kidney Association. Patients and carers contribute to decisions about research, the information we produce and how patient data are used.
We want people to understand their kidney health and have a say in their care. This includes being able to access their health records and understand how information about them helps improve kidney services.
The Patient Council brings the experiences of people affected by kidney disease into our work. Members review research proposals, contribute to clinical guidelines and help make patient information clear and useful.
Patients Know Best (PKB) replaced PatientView as the service we use to help kidney patients access their health information. Learn how to register, view your results and get help with your record.
Information about kidney care helps us understand how services are performing and where improvements are needed. Read about the information we collect, how we protect it and your rights and choices.
The Consent for Approach for Research (C4AR) database is designed to help people with kidney disease hear about research they may be interested in. Agreeing to be contacted does not mean agreeing to take part in a study.
Patients help decide how data are used
Patient Council representatives take part in reviewing applications to use UK Renal Registry data. They consider proposals from a patient’s perspective and help decide whether the research should go ahead.
Their involvement gives patients a direct role in decisions about the information held by the registry.
Understanding the findings
Our patient summaries explain the main findings from national reports on kidney care.
The National Kidney Patient Survey, previously known as the Kidney PREM, reports how patients experience their care and where services could improve.
Read patient summaries of our reports