The UK Renal Data Collaboration (UKRDC)
Retha Steenkamp, Head of Operations, UK Renal Registry, Retha.Steenkamp@renalregistry.nhs.uk
Manish Sinha, British Association for Paediatric Nephrology (BAPN), email@example.com
Damian Fogarty, NI representative, firstname.lastname@example.org
Afzal Chaudhry, PatientView (PV) and Renal Information Exchange Group (RIXG), email@example.com
Wendy Medcalf, The Scottish Renal Registry (SRR), firstname.lastname@example.org
Detlef Brockenhauer, UK Registry for Rare Kidney Diseases (RaDaR), email@example.com
Fergus Caskey, UK Renal Registry, firstname.lastname@example.org
Keith Simpson, UK Renal Registry, email@example.com
Ron Cullen, UK Renal Registry, firstname.lastname@example.org
Argiris Asderakis, Wales representative, email@example.com
James Chess, Wales representative, firstname.lastname@example.org
UK renal units started using computerised electronic patient records (EPRs) in the 1960’s. Every adult renal unit in the UK now has a well-developed EPR system provided by a variety of third party software suppliers. The early versions were both powerful and flexible. They were mostly configured by enthusiastic nephrologists and were successful at supporting and recording the care of patients who are dependent on renal replacement therapy (RRT).
This has resulted in great expertise around the UK, but because these EPRs were deployed before standards had been developed many systems were built with individual schemes for communication, coding, naming conventions, definitions, error trapping and validation. As a result, most renal EPR systems cannot support modern and now often mandatory processes for security, patient identification, clinical coding (diagnoses and procedures) or the use of granular hierarchical schemes that allow data to be grouped automatically.
Few current systems can store the metadata which are required to interpret data correctly (e.g. assay method and reference range) and it is impossible to transfer records electronically between renal units or other specialities when a patient changes address or status. In some cases word of mouth and local knowledge are required to interpret the data and operate the systems. In recognition that better use could be made of existing knowledge, collaborations, patient involvement and new information technologies, the UK Renal Data Collaboration was formed at a meeting at The Royal Infirmary Edinburgh on 29 Nov 2012.
Aims of the UK RDC
- To improve and standardise the scope and detail of data recorded 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, as required, rapid transfer of a full patient record and full access to data by patients
- Furthermore it is hoped to improve the use made of available data and thereby improve efficiency
To this end the UKRDC made the following proposals for IT developments in the renal community in the UK. These have been approved by the UK Renal Information Governance Board (RIGB), the SRR Steering committee, RaDaR, PV and BAPN and they have been discussed in outline with the UK renal unit suppliers of IT systems and EPRs:
- Adopt standard terms using SNOMED CT and the National Laboratory Medicine Catalogue (NLMC) with advice from the UK Renal Terminology Committee. The NLMC has been developed by the Royal College of Pathologists and the Health and Social Care Information Centre (HSCIC). It supports lab requests and results reporting and includes SNOMED CT identifiers and metadata. The UK Renal Terminology Committee includes a professional terminologist from the HSCIC and has close links with the HSCIC, NLMC and the ERA-EDTA and its coding scheme.
- Adopt standard methods for labelling and formatting data via the creation of a data model and standard messaging systems. A data model has been created for the UKRDC, please click here to view the data model in detail.
- Develop two way communications between all participants including patients via PV. This will require clear rules about data primacy, provenance, distribution and version.
- Build and maintain a data warehouse with a suitable operating system, security, communications and database. This will act as the communications hub for the organisations in the UKRDC and provide expert advice on the choice of warehouse or database.
The warehouse will:
- Provide secure, fast and high capacity data storage with validation and version control
- Support a query language with output to other renal systems and external analysis software
- Adhere to relevant principles specified in The Renal Information Exchange Group (RIXG) renal database recommendations/operational requirements
- Manage data with sufficient granularity and associated metadata to support the needs of the most exacting requirement set by a UKRDC member
- Identify data records with a unique ID e.g. using a Global Unique Identifier (GUID). This will facilitate the inevitable corrections required
- Collaborate closely with the UK renal IT/EPR suppliers
- Improve renal unit clinical and data governance and acceptance of standardisation of clinical terminology and message structure
- Adopt fully electronic records that will support the highest standards of care, decision support, embedded prompts, error and pattern detection, full access for patients, reuse of data for secondary purposes including quality improvement, service development, clinical and epidemiology research and teaching. The systems adopted must be fast and flexible. A powerful database and server will be required for the warehouse with a sophisticated query system.
The UK Renal Data Collaboration consists of the following organisations:
UK Renal Registry
Renal Information Exchange Group (RIXG)
UK Registry for Rare Kidney Diseases (RaDaR)
British Association for Paediatric Nephrology (BAPN)
Patient View (PV)
Scottish Renal Registry (SRR)