Patient Reported Experience of Kidney Care in the UK 2019

We are pleased to present the 2019 Kidney Patient Reported Experience Measure report (Kidney PREM). Following the initial pilot in 2016, involving over 8,000 people living with kidney disease, participation has continued to grow and the measure is now collected right across the UK and the number of responses has doubled with over 16,000 patients giving their views on their care experience.This unique source of data has been recognised and used throughout the renal community as the international drive for person-centred outcome data across the healthcare system gains momentum. The UK Kidney community is proud to be a part of this international work towards better understanding and improving patient experience.More importantly, our vision of the Kidney PREM is that it is used as a driver for change at a local level. We know the top-level scores are not the full story and that improvement, particularly around the three lower scoring themes - shared decision making, transport and needling - is complicated. There are no easy answers, however, there are some centres who are getting it right and we would like to better understand why this is and what they are doing that could be shared. The working group behind delivering the Kidney PREM continues to work hard to gain a better understanding of the many questions that the Kidney PREM throws up - What is it about a centre that causes it to have the biggest impact on patient experience compared to the other variables collected? Does the Kidney PREM result in an improvement in patient experience? If so, can this improvement be translated to different settings? We do not want the Kidney PREM to stand still. Through research projects, consultation and our own quality improvement, we hope the data and community response to the Kidney PREM will continue to evolve so that it remains meaningful, embedded across the system, and improves the experience and outcomes of people living with Kidney disease, as well as those who care for them in the UK. Thank you for being a part of it.