Renal IT and the Registry
A nurse at Fulham hospital using Proton, an early electronic patient record. From Gordon et al 1983.
There was a time when the way to get results after the transplant clinic was to phone the biochemistry lab and transcribe the results into a paper flow chart in the patient’s notes as the lab staff read them out.
Contents
The History of Renal IT in the UK
Renal Units in the UK were international pioneers in exploiting the potential of information technology (IT) development from the 1970s onwards. The predominance of numerical data in renal practice, combined with repeated complex treatment episodes for long term care and staffing pressures, were particularly suited to IT solutions. Initially the focus was on computation (for example predicting transplant rejection, calculating glomerular filtration rate (GFR) from serum creatinine, assessment of dialysis dose) as much as on retrievable data storage and presentation.
The renal unit at Charing Cross Hospital under Hugh de Wardener, led the way in developing a computerised system supporting clinical renal care. Mike Gordon and Conrad Venn, innovators of the Charing Cross system, went on to commercialise it through Clinical Computing Ltd (CCL). CCL remained for many years the predominant software suppliers to UK renal units. Other early adopters after 1979 were Robert Sells (Transplant Surgeon, Liverpool) and Martin Knapp (Nephrologist, Nottingham).
British Renal Computing Group (BRCG)
In 1982, at the instigation of Molly McGeown (Belfast, and Renal Association president 1983-6), Neville Selwood (UK Transplant Service, now NHS Blood and Transplant) and Roberts Sells, the BRCG was established to encourage the coherent development of renal computing in the UK. Es Will (Leeds, St James’s) was its first chair. BRCG had an annual national meeting, and its early initiatives included routine calculation of dialysis dose (Kt/V) using PROTON, increasing awareness of Expert Systems and Bayes Theorem, explaining the Data Protection Act 1984, and investigating the role of renal unit computer support staff. BRCG also worked to improve the annual (paper-based) unit reporting of each patient on renal replacement therapy to the ERA-EDTA Registry by increasing digitisation.
The BRCG operated from 1983 to 1988. It ran in parallel with a CCL User Group. This early work of BRCG coupled with the increasing use of PROTON and other electronic databases in renal units paved the way for the development of the UK Renal Registry from 1995.
In 2017, Es Will assembled surviving colleagues who were the linchpins of BRCG for a one-day seminar to reflect on its achievements. Read the transcript here:
UK Renal Registry
When the Renal Registry was founded by the UK Kidney Association in 1995 it was by no means certain that it could be successfully established, would be sustainable and comprehensive, or would be able to fulfil its potential. But it became an essential tool for quality improvement, and for political leverage. Read a short introduction by Chris Winearls about the origins and achievements of the Registry. Then the growth, development, and achievements of the Registry are described in more detail The UK Renal Registry The First 25 Years 1995-2020 by John Feehally.
A personal critique of the Registry by Es Will provides an additional perspective (Will EJ. A short cultural history of the UK Renal Registry 1995–2020 BMC Nephrology 2020; 21: 338).
Renal Information Exchange Group (RIXG) (2003-2014)
RIXG was a multi-disciplinary group with representatives of professional and patient organisations convened to seek consensus and development over a wide range of renal IT issues. RIXG was chaired by John Feehally (Leicester) until 2010, and then by Afzal Chaudhry (Cambridge) until it was disbanded in 2014.
The most important achievement of RIXG was the development of RenalPatientView (RPV) …
Renal PatientView
Renal PatientView (RPV; later PatientView) emerged from the earliest meetings of RIXG (above), where discussions were set up to ask patients and staff what could be useful, what exists already, what could be done to develop services in the light of the development of computers and the (still relatively new) Internet. Proton (see above) was demonstrated. Patients immediately saw how quick access to that information could be valuable to them, and those on the staff side agreed. A mini-demo of a possible system led to funding of a pilot project in 2004.
RaDaR, the Rare Renal Diseases Registry
The value of the Renal Registry was obvious, but it collected mostly quite high-level data relevant to auditing and managing services. The idea of creating national system for collecting granular data on two rare diseases was discussed in 2007 and a grant awarded by the MRC in 2008 to pursue the idea.
Authorship
First published 2023
Last Updated on April 17, 2025 by neilturn