We have been working with the NHS Information Centre and UK Renal Registry (UKRR) to get a National Renal Dataset (NRD) for children and adult kidney services approved as a standard for use across England. I am delighted that the application has now been approved by the Information Standards Board for Health and Social Care (ISB HaSC).
The NRD is the first to cover the entire speciality rather than a section of the pathway and has been designed to answer all the information requirements of the NSF. The majority of data items being mandated from May 2009 are contained within the current UKRR and UKT data collections; however there are new items to be gathered which will need systems development and I have written to all clinical directors to bring this to the attention of Trust IT departments now so that any preparatory work can be started as soon as possible.
Each data item within the dataset has a name, a definition, a description and details of the values that can be recorded. Where the data item is to be derived from more than one piece of clinical data, this is also defined. The data item also has a marker to state whether it is part of an existing collection (eg UKRR) or whether it is new as well as a ‘primary information requirement’ specified as part of the definition.
Clinical terminology to support implementation in clinical systems will be published by NHS Connecting for Health.
As the NRD is a large dataset (953 data items) a phased approach to implementation by renal services has been agreed. For collection from May 2009 (693 data items), with a further 188 data items mandated for collection from April 2011.
The NHS IC is developing functionality in the Secondary Uses Service thus enabling data from UKRR and UK Transplant to be joined and linked to data for other clinical specialties; authorised users of the Secondary Uses Service will be able to access the data and run pre-defined reports or create bespoke data queries.
The ISB will now issue a Dataset Change Notice (DSCN); the formal mechanism that notifies NHS Trusts and their system suppliers of mandatory collections. It will give 6 months advance notice before collection of the data is required to start from May 2009
This exciting development, taking into account Trusts, UKRR and UKT saw over 120 people outside the IC involved with the project. Just within NHS trusts (from named contacts that we have worked with and people who responded to the consultation), I know of 96 individuals in 36 trusts, of which 54 were clinical staff, 18 Allied Health Professionals, 16 informatics staff and 8 general managers. I am particularly grateful to Bradford, Bristol, Derby, Exeter, Leeds and Norwich, the demonstration sites who have been able to return the whole dataset.
ISB HaSC will be publishing the submission document and the ISB HaSC output two weeks from 17 November 2008, on their website.
For more information please look at the National Datasets Service website. From this page you can download both the dataset specification and supporting documents, such as guidance for renal services implementing the dataset.
bedtime reading: renal dataset change notification published
Q & A: national renal dataset