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2014 – The Seventeenth Annual Report
Welcome to the 2014 edition of the UK Renal Registry report. The UK kidney community is fortunate to have such a mature source of information, with statistics that demonstrate the clinical effectiveness of treatment regimes and real-world data for research. For years it has provided an invaluable repository of information which is extracted and used by healthcare professionals to improve patient care, and to show how well their hospital is managing kidney failure in clinical terms.
However, whilst the UK Renal Registry is a resource created to improve patient care it has traditionally done this for patients – now it plans to do it with patients. People and families affected by kidney disease want to know about how well their care is being delivered, whether it is better or worse (for outcomes and experience) in their hospital or the one up the road. The UK Renal Registry reports on areas that are essential to patients, but not many patients know about it. It is a resource for all and 2014 marks the year when its first Patient Council was formed to advise and guide on its work from the perspective of those who receive care. This year the first, more accessible report, aimed at a patient audience was published, with a selection of facts and figures for kidney patients, showing for example the proportion of patients on home dialysis therapies, numbers starting dialysis by age, gender and race, and numbers on the transplant waiting list. Perhaps in time it can bring out differences in outcomes for those on different dialysis therapies, or waiting times for transplant by different units.
The Kidney Health: Delivering Excellence report (2013) (www.britishrenal.org/getattachment/Kidney-Health/Kidney-Health-Delivering-Excellence.pdf.aspx) demonstrated the effectiveness of patients and professionals working together. This is espoused in in new UK Renal Registry projects such as that addressing the huge patient safety issue that is Acute Kidney Injury and another to test how activating and coaching people with Chronic Kidney Disease might lead to improved outcomes, including experience.
The core reporting data about access to, quality of and outcomes from dialysis will become even more important to monitor patient care in the face of significant economic challenges and commissioning changes. Publishing registry data to guide commissioners and to assure patients that they continue to receive the right care and choices is key for the future.
The word data is derived from the Latin word ‘datum’, meaning ‘something given’. The UK Renal Registry can give something to all of us, so sharing it, making it accessible and keeping it timely can guide and protect us and help us work together to assure consistency of care and to answer our questions. Congratulations to registry staff for their hard work in producing the 2014 report in good time.
UK Renal Registry Patient Council
British Kidney Patient Association