Renal IT and the Registry

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Renal IT and the Registry

The History of Renal IT in the UK

Every day we take for granted that IT systems are there and ready to assist us as we deliver care for people with kidney disease. But this was not always so.

But, for example, 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.

There was a time when there was no UK Renal Registry and we had no idea about the comparative performance of our units, and no prospect for the opportunities now afforded by a comprehensive registry for epidemiological studies, public health research, audit, and quality improvement.

There was a time when none of our patients had the opportunities now given by PatientView to review their own results and other renal health data.

There was a time when there was no registry of patients with rare renal diseases, as is now the case through RaDaR, to improve care and foster research.

Renal Units in the UK were quick to exploit the potential of information technology (IT) development in the 1980s.   The predominance of numerical data, combined with repeated complex treatment episodes for long term care were tailor-made for 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 development of PROTON (the UK’s first renal database) at Charing Cross Hospital by Hugh de Wardener, and its commercialisation through Clinical Computing Ltd (CCL), boosted the everyday clinical potential of computing. Other early adopters after 1979 were Robert Sells (Transplant Surgeon, Liverpool) and Martin Knapp (Nephrologist, Nottingham) after 1979.

In 1982, at the instigation of Molly McGeown (Belfast, President, Renal Association 1983-6), Neville Selwood (UK Transplant Service, now NHS Blood and Transplant) and Roberts Sells, a British Renal Computing Group (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:  Clinical Renal Computing Witness Seminar.

History of the 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.  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)

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

Started in 2005, RPV was a first in UK health care, a digital system allowing patients and carers to have password-protected access to their clinical information held in their local renal unit IT system through an intermediate web server.    A £75,000 grant to establish proof of principle was obtained from the Department of Health. Under the leadership of Neil Turner (Edinburgh) and Keith Simpson (Glasgow), collaborating with an independent web development company, by early 2005 there was a working model in  a pilot scheme in four renal units which used Proton. It was immediately welcomed by patients and carers as an effective and user-friendly means for patients to access their own clinical information.   A minority of RA members were cautious that such access may generate anxiety and increase demand for communication with patients between clinic visits that would be hard to sustain, but this did not materialise. RPV steadily grew to full national coverage as technical links with all renal unit IT systems were established. Originally offered to those receiving RRT, its application expanded to all patients with information held on renal unit IT systems.

In 2008 a sustainable technical and governance future for RPV was secured by co-locating its administrative support in the Registry offices. A capitation funding model was agreed – initially £2.50 per RRT patient for every unit in England where patients used RPV.   Growth was rapid – by 2009 there were already 10,000 RPV users. The RPV committee, vigorously led by Turner and Simpson, continued to improve the interface and increase its functionality.

A change of name to PatientView in 2014 was decided since the system was now being offered to other specialties (and was first taken up for inflammatory bowel disease).RPV is a unique development which   placed the renal community at the forefront of digital clinical applications.

Last Updated on March 26, 2024 by John Feehally