Wednesday, August 29, 2012

New results for RPV

We've had lots of requests for extra tests in RPV.  We've been delaying an update to that because of two important projects running alongside RPV:
  • Rare disease info - see last post
  • Better Renal Registry data - the UK Renal Registry collects info on how renal units are doing across the UK. 
Now we're nearly ready for our third major update to RPV data - the last one was 3 years ago.  These are the proposed additions, but it's important to remember that the availability of any of these will depend on them being available from the right computer system in your renal unit:

Tests and measurements
  • Full blood count - show MCV, and counts of the different types of blood cell (red and white)
  • LDH
  • Lipids - HDL, LDL, ratio (RPV already has cholesterol and Triglycerides)
  • Magnesium
  • Thyroid function tests: T4, TSH, T3
  • Pancreas tests: Amylase, lipase
  • Vasculitis tests: ANCA, Pr3, MPO
  • C3, C4 (?else)
  • Lupus tests:  anti-dsDNA antibodies
  • Observations: Temperature, pulse, oxygen saturation, inspired oxygen
  • Blood gases:  pO2, pCO2, H+, pH
  • B12, folate, red cell folate
  • PSA
  • 25 OH vit D 
Infection tests
  • Hepatitis serology (HBV, HCV)
  • Other serology (CMV, EBV, VZV)
  • HIV serology
  • MRSA results
  • PCR results for CMV, EBV, BKV, HBV, HCV
  • Access type
  • Access site (location and side)
  • Blood flow rate
  • Dialysis flow rate
  • Times per week
  • Minutes of dialysis per session
  • Dialyser name (name + size)
  • Dialysis session: date, vascular type and location. (?else)
24h Urine results (totals not concentration)
  • Volume
  • Protein
  • Creatinine
  • Creatinine clearance (crude, not normalised for surface area)
  • Urea
  • Sodium
  • Oxalate (?)
  • Calcium (?)
Appointment info
  • Appointments: date, time, who/what/where
Quality checks
At the same time as asking for these to be sent, we will be asking local IT system suppliers to check
  1. they are sending the Units of Measurement with each test
  2. that they have a mechanism for quality-checking their patient list

Friday, August 24, 2012

Rare Disease Registers, coming soon via RPV

If you have a rare disease, it's trebly difficult.
  • It's difficult to find reliable information
  • It's difficult to find other people who have it
  • It can also be difficult to find doctors who know much about it
These aren't just frustrating, they can be dangerous.  In response to this, a Rare Kidney Disease Initiative has been launched, based on Rare Disease Groups.  At first there will be 11, listed at

Each rare disease group (RDG) will need lists of patients, ways to contact them, and ways to keep up with  how they're doing.  Most of this info is already in Renal PatientView, so if you want to join, the first thing you'll be asked to do is to sign up to sharing your info with the Disease Group. 
This system is being called RADAR (Renal Rare Disease Registry). Your name and where you live won't be part of that, but they will be kept so that the group's organisers can keep you up to date with info and research, and get you together online or in person. 

A lot of work has been going on behind the scenes to make this technically possible, and to make it as easy as possible for staff to get info into the system.   We hope that the first new group, the Alport group, will launch very soon, closely followed by the others.

More info has more about the Rare Kidney Diseases initiative
The BKPA and Kidney Research UK have supported the development of 'RADAR' and its integration with RPV, to keep the register for each disease. 

The image shows rare kidneys and common ones.

Tuesday, August 21, 2012

Recruitment: a new unit takes the lead

A year ago we mentioned Salford's recruitment drive.  This August, Salford took over the lead from long-time trailblazers Bristol.  At the end of July Salford recored 1211 RPV registrants.  We compare this with the size of the renal unit as measured by number of patients on dialysis and with transplants;  at the end of 2010 this was 837, giving a ratio of 145%.  (As many RPV users are renal patients who don't need dialysis or a transplant, this number can be over 100%).  Here is the leader board:
Salford 145 %
Bristol 137 %
Edinburgh 114 %
Nottingham 100 %
Preston 97 %
Glasgow 96 %

Great achievement.  National averages are National averages are Scotland 75%, England 45 %, Wales 18%, Northern Ireland 5%.
Dr Grahame Wood describes Salford's approach here, and you can find further ideas in our RPV recruitment toolkit.   

Photo source

Monday, August 20, 2012

80% of renal units will soon have RPV

Green flags are units with RPV; Red - it's on its way
It's been great to welcome several more units during 2012.  By the end of this year it should be available in adult renal units covering:
  • All of Scotland
  • All of Northern Ireland
  • All of the North of England from Yorkshire and Merseyside
  • All of the South West and South coast of England
(see the full map here)
RPV is already  available in 100% of units in Scotland, including the Sick Children's Hospital in Glasgow.  Progress has been slower in Wales, and some London units, but several units are making progress.  Just 10 out of 73 adult units don't seem to be have plans yet, 7 in England and 3 in Wales.  We're writing to them again. 

This is great news and will make it easy for patients in these units to join the new Rare Renal Diseases Registers which are about to launch.  More about these soon.

Sunday, August 19, 2012

An RPV publication, and In The News some more

A long-needed paper describing the development of Renal PatientView and responses to it has just been published in the open-access journal BMC Medical Informatics and Decision Making.  Read it at
Cherry Bartlett started working on the analysis of responses to RPV a long time ago and it's great to see it published at last.  It should appear in its final format soon, at the moment it's the abstract and a provisional pdf file. 

And in the News:
 Should patients be able to control their own records (behind paywall unfortunately) from the British Medical Journal July 2012, plus a podcast about it which is open to all - the bit about about RPV is from 9 mins.