UK Renal Data Collaboration

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The UK Renal Data Collaboration (UKRDC) was formed at a meeting in The University Department of Medicine, The Royal Infirmary Edinburgh on 29 Nov 2012. The current organisations in the UKRDC are the UK Renal Registry (UKRR), the Scottish Renal Registry (SRR), Renal PatientView (RPV), the UK Registry for Rare Kidney Diseases (RADAR) and the British Association for Paediatric Nephrology (BAPN). The UKRDC itself therefore represents a strategic alliance with each organisation retaining their own governance structures through their respective accountable officers. More details are available in the UKRDC White Paper.

Quick link to UKRDC downloads (Acronyms in Renal Medicine, SNOMED CT for Renal EPR Suppliers, UKRDC White Paper)


D4D Medicine Reconciliation Pilot - November 2014

As part of a £3.6m competition funded by the Department of Health through the Small Business Research Initiative, and managed by the National Institute for Health Research Devices for Dignity Healthcare Technology Co-operative (NIHR Devices for Dignity HTC), the UKRDC was recently successful in gaining funding for a project to deliver patient results in real time via PatientView along with associated additional modules to allow patients to flag up mistakes and changes in their medical records.

Quick link to D4D downloads (Patient and staff information, patient and staff survey questions & informational poster)


Aims of the UKRDC

These are:

to improve and standardise data recording scope and detail in renal units;

to move to paperless electronic patient records;

to improve and standardise data communications between the UKRDC member organisations and between renal units allowing rapid transfer of a full patient record as required and full access to data by patients.


To this end the UKRDC made a number of proposals (listed below) for IT developments in the renal community in the UK. These have been approved by the UK Renal Information Governance Board, the SRR Steering committee, RaDaR, RPV and BAPN and they have also been discussed in outline with the suppliers of IT systems and electronic patient records to the UK renal units in 2012.

1. Adopt standard terms using SNOMED CT and the National Laboratory Medicine Catalogue (NLMC) with advice from the UK Renal Terminology Committee.

2. Adopt standard methods for labelling and formatting data via creation of a data model and standard messaging systems. A data model has now been created for the UKRDC: http://www.renalreg.com/UKRDC/UKRDC/index.htm.

3. Develop two way communication between all participants including patients via RPV. This will require clear rules about data primacy, provenance, distribution and version.

4. Build and maintain a data warehouse with suitable operating system, security, communications and database. This will act as the communications hub for the organisations in the UKRDC.


Adoption of Standard Terms

To advance this work, particularly in relation to proposal (1) described above, there is now a need to compile, maintain and publish a standardised list of data items (including definitions, descriptions and other various metadata elements) recognised as valid for electronic transmission between renal units and the members of the UKRDC.

Accordingly the Terminology Committee is therefore convening a working group, to be led by Dr James Medcalf, to progress this work. In doing so and in line with its constitution it will be draw upon the expertise of members of the UKRDC constituent groups, the Terminology Committee itself along with invited experts from the Health & Social Care Information Centre (HSCIC), the NLMC group (a joint venture between the HSCIC and the Royal College of Pathologists) and others as appropriate


Implementation of Standard Terms / Coding Frameworks

Going forward renal-specific and other electronic systems should be able to utilise coding systems where required with SNOMED CT being the preferred terminology. Specific advice about this and a list of requirements is available in ‘SNOMED CT within Renal Applications Guidance Document for Renal IT system suppliers’ which is now published by the UK Renal Data Collaboration (UKRDC) and available for download.


Last Updated on Tuesday, 09 December 2014 07:48