Patient reported data

Patient-reported data describe people’s experiences of kidney care, their symptoms and health, and their confidence in managing their condition.

These perspectives complement clinical records, helping build a fuller understanding of kidney care and its impact. The UK Renal Registry (UKRR) has collected patient-reported information to support clinical audit, quality improvement and research.

Patient experience

Patient-reported experience measures (PREMs) capture how people experience their care, including communication, involvement in decisions, treatment and the care environment.

The National Kidney Patient Survey, run by the UK Kidney Association in partnership with Kidney Care UK, collects this information annually. Responses include information about the patient’s kidney centre, treatment and demographic characteristics, alongside their experiences of care.

The UKRR uses these responses to analyse patient experience and publish findings through reports and the PREM data portal. Kidney teams can use the findings to identify priorities for service improvement and review changes over time.

View the data portal

Patient-reported outcomes and activation

Patient-reported outcome measures (PROMs) capture people’s own assessments of their symptoms and health. The Patient Activation Measure (PAM) assesses their knowledge, skills and confidence in managing their health.

The UKRR collected both through the Your Health Survey, used in the Transforming Participation in Chronic Kidney Disease programme and subsequent work during 2016–2018.

The dataset includes responses from adults receiving care at kidney centres in England, including people receiving dialysis or living with a kidney transplant. It brings together:

Symptom information measured using POS-S Renal
Self-reported health measured using EQ-5D-5L
Patient activation measured using PAM
Demographic and treatment information

These data have supported research examining relationships between patient activation, symptom burden and self-reported health.

View the Your Health Survey dataset catalogue

How is the information collected?

National Kidney Patient Survey

Patients contribute experience data by completing the National Kidney Patient Survey during its annual collection period.

Current collection dates, participation guidance and information to help kidney teams support the survey are available on the National Kidney Patient Survey page.

Results are published through reports and the data portal.

Your Health Survey

For the historical Your Health Survey collection, kidney teams distributed questionnaires for patients to complete. The UKRR processed the responses and linked them with clinical and demographic information to support analysis.