History of Renal IT in the UK

Authored by: Neil Turner, John Feehally

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.

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 opportunity to review their own results and other kidney 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.

How did it all begin?

Although the ERA-EDTA Registry began to collect data about people with ESKD across Europe from the 1960s, and many UK units contributed, this was done by the cumbersome method of submitting paper returns.

For dialysis patients, the importance of numerical data during repeated complex treatment episodes was tailor-made for IT solutions. The renal unit at Charing Cross Hospital under Hugh de Wardener led the way in developing a computerised system supporting clinical renal care, which was commercialised through Clinical Computing Ltd (CCL). CCL Proton remained for many years the predominant software used by UK renal units. Other early adopters were Robert Sells, transplant surgeon in Liverpool, Martin Knapp in Nottingham, and Es Will in Leeds.

A British Renal Computing Group (BRCG) was established in 1982 to encourage the coherent development of renal computing in the UK; Es Will was its first chair.  Read more about the ideas and applications they developed here: Clinical Renal Computing Witness Seminar.

The beginning of  the UK Renal Registry

In the mid-1980s, Renal Association (RA) leaders met the Secretary of State for Health and for the first time got agreement that resources would be provided to treat a predictable number of new ESKD patients each year.  A key to their success was the availability of incidence data from three separate regions -  integrated, peer reviewed and published.  So why not share more data from more centres and create our own Registry?

When the RA founded the UK Renal Registry in 1995, it was by no means certain that it could be sustainable and comprehensive, and could fulfil its potential.  With Terry Feest (Bristol) as its first chair, it steadily developed to meet all these goals, publishing its first annual report in 1997 and providing full UK-wide coverage by 2008. Don’t underestimate the technical, financial, and conceptual challenges which were overcome to give us the powerful Registry we have today.

Read more about the history of the Registry: Renal IT and the Registry – UK Kidney History

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. Neil Turner (Edinburgh) and Keith Simpson (Glasgow) led a pilot scheme on four units using PROTON, which was immediately welcomed by patients and carers as an effective and user-friendly means for patients to access their own clinical information. Before too long, it was available in all UK units. Originally offered to those receiving KRT, its application soon expanded to all patients with information held on renal unit IT systems. Read more about PatientView :  https://ukkidneyhistory.org/themes/renal-it-and-the-registry/renal-pati… 

RaDaR

In 2008, a rare disease registry was started by Moin Saleem (Bristol), initially focused on glomerular disease in children. And this successfully provided the basis for a generic system for all rare diseases; so that we could end the proliferation of standalone databases and drug company-funded registries. At the same time, a UK rare renal disease strategy was being developed through the combined efforts of RA and BAPN working party.  That strategy established the principles for the rare renal disease registry we have today - RaDaR. Read more about RaDaR here and its history here.