The renal data revolution from 1980

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The renal data revolution from 1980

Renal units pioneer electronic records 

In the UK through the 1970s and 1980s renal units found themselves responsible for increasing numbers of patients, and services were stretched to capacity and beyond in seeking to cope with pressure of new starts.  Managing their complex treatments and monitoring frequent test results was a major problem for understaffed services.  At Fulham hospital in West London in the late 1970s, doctors collaborated with computer programmers to simplify and speed storage and access to numerical data, presenting it both in tables and graphs.  However as needs changed, they realised that a system that could be configured without involvement of skilled programmers would be more versatile.  The principles spelled out in their 1983 paper should be read by today's IT system designers. 
Proton, as it became known, ran from a central server with interactions through terminals.  As it antedated the computer mouse, navigation used the numeric keypad.  Flipping from one patient to another was nearly instantaneous, and presentation of results was in time-ordered tables and graphs quickly allowing trends to be identified.  This was one of the earliest electronic patient records in the world. 
Proton spread to serve most of the renal units in the UK, with a local server for each.  Remarkably, in 2005 it still served 40% of UK renal units, and it still serves many thousands of renal patients today.  The key to its longevity was its local configurability, so it could be adapted to local needs and new functions.  The quality and accessibility of this data was also invaluable politically, it was used to draw attention to provision rates of dialysis and transplantation in different regions of the country.  Renal registries went on to compare performance of different units in death rate, transplantation, anaemia, and an increasing number of other markers of quality of service, well in advance of such systematic evaluation of performance being implemented in most other specialties. 
This relatively advanced level of electronic information provision became the norm in renal units in the UK, with several other IT companies offering renal systems over the next 20 years. 
PatientView was launched in 2005 as Renal PatientView, the online version of the data in units, showing live test results with information links to patients via a secure login.  The data came from that stored in electronic systems in units.  By the end of 2012 it had over 25,000 registered users from over 80% of UK renal units.  Take-up has reached over 50% of dialysis/transplant patients in a number of units and there is enthusiasm for it from patients and staff. 
The design of Renal PatientView is remarkably similar to Proton screens.  It gives data to patients via the web in the same way as it was designed to give data to clinicians 30 years earlier. 
Further info
Gordon M, JC Venn, PE Gower and HE deWardener.  1983.  Experience in the computer handling of clinical data for dialysis and transplantation units.  Kidney Int 24:455-63
About  PatientView
, www.rixg.org/patientview2 
Bartlett C, K Simpson, AN Turner 2012 Patient access to complex chronic disease records on the Internet.   BMC Medical Informatics and Decision Making 12:87

Images: Fig 1 is from Gordon et al 1983.  Fig 2: Creative Commons. 


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