The UK Renal Registry is excited to introduce an updated version of the data items that are now crucial to measuring quality in kidney pathways.
By significantly reducing the items to collect we hope that we have made the purpose behind their collection clearer to clinicians and coders.
Dataset version 5 has a simplified structure to fit within the clinical pathways that it is designed to measure. It also fits better with the UKRDC data feed, as the only way to transmit data to the UKRR if we are to deliver ‘timely data’ together.
The dataset includes all the items expected from the NHS England specialised services quality dashboard (SSQD), the annual dialysis access survey and the COVID-19 data collection.
Any centre submitting this dataset should therefore not need to supply data for any other current (or anticipated future) collections, but there is a separate data specification for the Patient Viewer data that will be released.
In parallel with a new dataset, there are two other key changes we are proposing:
- That a GFR < 30 (CKD4) becomes the standard threshold for data transmission to the UKRR. This is because a large proportion of the quality improvement proposed by the UKKA, RSTP and GIRFT takes place before the start of renal replacement therapy.
- That the dataset version 5 data must come to the UKRR in a UKRDC feed (and the current quarterly files will be stopped). We have collectively expressed that the data is not timely enough, and now is the time for the step-change required to make this happen.
To improve data quality, we are designing a real-time viewer. This will allow renal unit data managers to review data completeness and quality from their centre and highlight missing information that needs to be updated in the clinical record.
A viewer designed for rapid visualisation of basic data is also in development. Driven by the version 5 dataset submitted through the UKRDC, it will provide much of the routine information required by renal units and regional networks to follow trends close to real-time. An example of this might be the proportion of patients starting with at-home dialysis therapy.
We are developing a significantly shortened RR7 code-set (treatment timeline) to remove outdated concepts and structured to match the UKRDC schema. We are expecting to add different types of CKD care codes and to tighten the definition of ‘conservative kidney care’ to reaching symptomatic CKD5. We will release this for comments also in the next few weeks.
We are looking for feedback on these proposed changes, but in particular, we draw your attention to:
- A significantly shortened RR7 code-set to remove outdated concepts. We welcome feedback on whether some of the depreciated codes are still needed and comments on the new CKD codes. The definition of ‘conservative kidney care’ in this code-set is about reaching symptomatic CKD5.
- The ‘future care planning’ concept. Some of these themes are already in use (transplant assessment before RRT start for example in the SSQD). Introduced as a generic concept, we hope it can be extended in the future depending on the pathway.
- The removal of a separate paediatric ‘block’. Whilst height and weight are important in monitoring growing children, the concept is not exclusive to them; i.e. for the vast majority of measures, we need the same information for all ages.
Feedback or questions should be to the email@example.com mailbox, and the consultation is open till the end of October 2021.
We anticipate collecting responses together before incorporating the feedback into a final version of the dataset by the end of December 2021.