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22nd Annual Report – data to 31/12/2018
It is a pleasure to write a foreword for the 2018 UK Renal Registry (UKRR) Annual Report. This report was entirely typeset in-house, with substantial savings in production time and money. This will give us much more flexibility on how we publish reports, for example, the recent acute kidney injury (AKI) report, and also ad hoc publications, where time is of the essence.
Highlights of this year’s report include a comorbidity adjusted survival analysis for all renal centres, made possible by the now routine linkage of UKRR data with Hospital Episode Statistics and Patient Episode Database for Wales. This is just the beginning of the analyses possible through these linkages. Our collaboration with Getting It Right First Time has shown that there are other useful measures (and differences) in hospital resource use, which we should incorporate into our regular reporting too. We also have a new chapter summarising home haemodialysis care, and for next year are expecting to publish at least a basic analysis of the chronic kidney disease stage 4−5 data, which some renal centres are submitting.
All reports in the last three months have referenced the extraordinary impact of coronavirus on the normal ways we work. For us at the UKRR it has highlighted the power of collecting a small number of items consistently and reporting on them in very quick time. Our regular weekly or fortnightly reporting of COVID-19 cases and deaths has been widely used to help deliver safe and effective care. We plan to learn from this experience over the next few months and are looking critically at the list of items we routinely collect, from where, and how. Also, with the increasing use of the UKRR data portal, we plan to develop it to be ready to tackle current and crucially any future changes in kidney care.
Behind the scenes, we have changed the process to share data with others for research, with a streamlined initial expression of interest, followed by a full data application. To improve transparency, details of successful data applications and collaborators will be available on the soon to be released new Renal Association website. We are very sensitive to the fact that we need to make data available in a safe and secure manner to advance knowledge and health. It is therefore a persistent frustration about how hard it is to collaborate with others using any of our linked data for research when we are constrained in how we can share it. We are working with the wider Renal Association on possible ways to improve this, but these are longstanding restrictions, and are not limited to the kidney world.
Above all, the annual report of the UKRR provides the opportunity to thank all the renal centres, their and our
staff and all our collaborators for their commitment to consistently measure the quality of kidney care in the
UK. As we develop over the next year we will take care not to lose sight of the trust and support that we share to
produce analyses useful to everyone.
Professor James Medcalf, Medical director, the Renal Association