New Renal Disease Registers have first recruits

The UK's new Rare Renal Disease Groups have entered a new phase with Registries for each now opening for patients across the country.  13 groups will soon be able to enrol now in a process explained at www.rarerenal.org
(staff users see bit.ly/radaradminguide)  This way, patients with rare diseases can be linked together

• To share information with each other
• To share their data for the benefit of understanding and research

The lead groups are starting to enrol now but soon all will be going.
You can read the full list of diseases at rarerenal.org though not all are quite ready to start.  You can also read full criteria for joining here.  Ask your consultant in or after June if you are a patient of a UK renal unit who should/could be a member of one of these groups.  Enrolment is rolling out across the UK now; not all units will be ready for you yet - but it shouldn't be long. 

This development has been undertaken jointly with RaDaR.  Joined a disease group just needs your additional permission to share your data with the Group.  An earlier post has more info. 

We broke the forum

We posted questions about the value of the Forum in RPV earlier - and had decided to close it.  It was never very heavily used.  We know that many users were instead chatting away in online discussions elsewhere.
Two have been repeatedly recommended:

• Facebook's Renal Patient Support Group (search for it in Fbk).  This is open to anyone to read at the moment, but may have a trial of being a closed group soon.
• The Kidney Patient Guide (KPG) Forum is older, but is really excellent (click on the forum name, or link directly to forum itself here).  It's had over 52,000 posts. 

Both of these are very active and supportive.  

We're posting this now because the latest new version of RPV, with several features we'll report on soon, broke the RPV Forum.  So it's disappeared sooner than we intended, but we're inclined to leave it broken, if that's OK.  In the next version in a fortnight, we'll remove the Tab and you'll never know it was there.

If  you think this is a really bad idea, or otherwise, comments below are welcome. 

Screenshots of new RPV

The facelift is planned for Tuesday February 26th and there may be a short period of down-time from late morning during which the site won't be available.  There will be no unicorns, but here are a couple of screenshots:

One comment has been that the tabs (for instance, where to click to see Results), isn't so clear.  These things can be fixed.  Your feedback welcome in Comments below.

Read all posts in the RPV blog at renalpatientview.blogspot.co.uk 

New look coming

There will be no unicorns in new RPV

RPV is going to look a bit different very soon, so when it does, don't be surprised. Although the appearance will be a bit different, it will be very similar to use. So far it's looked the same since we started in 2005.

Behind the scenes these changes will also make RPV ready for Rare Disease Groups, and will make it possible to show information for patients with other diseases too in the future.

Unicorn image credit: jpegwiz / 123RF Stock Photo

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

Infection tests

• Hepatitis serology (HBV, HCV)
• Other serology (CMV, EBV, VZV)
• HIV serology
• MRSA results
• PCR results for CMV, EBV, BKV, HBV, HCV

Dialysis

• 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

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 www.rarerenal.org/diseases. 

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 

www.rarerenal.org 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.

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

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.

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 biomedcentral.com/1472-6947/12/87.
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.  

RPV is Open Source

RPV at NHShackday

The computer code behind RPV is 'open source'.  This means that anyone can see, modify, and use it; but not sell or resell it.  There are many examples of successful use of open source approaches in mainstream computing.  Many believe that it could lead to much better, more versatile and rapid coopoerative development of good technology in healthcare.  It could save a load of money too, and prevent healthcare organisations being locked into systems that communicate poorly with other systems.
RPV was one of the projects at nhshackday in April, and will very likely feature again in their planned second meeting in Liverpool in September.
YouTube video about RPV at NHShackday
More on benefits of Open Source. The same more concisely.

NHS Information Strategy promotes wider access to records

The new NHS Information Strategy, announced yesterday, promotes patient access to records at just about every level.  Renal PatientView is mentioned as an example of good practice in Chapter 2.
They understated our numbers (now around 20,000) and got the number of units a little confused (52 out of 72) but no matter, it's good to see others catching on.  And we should do more!

RPV in the news

 

Dr. Keith Simpson's presentation at the Health Informatics Congress in London on May 3rd received a lot of attention.  We were Twittered, there was an article in the Guardian, and a good deal more interest so more might follow.

New password strength checker

If you go to change your password, you'll now find a colourful new thing that tells you how 'strong' your new password is - in other words, how easy a machine or person would find it to guess it. 
Of course you need to be able to remember it too. 

This isn't the only defence.  If someone enters the wrong password too many times, the account is locked and you need to get in touch with your local RPV admin to unlock it for you.

1,000 UK renal patients looked up their records online yesterday

That's the headline of the latest RPV News which has just been published.  We think that RPV remains the UK's only national system for looking up specialty records and resulst.  There are now a number of local initiatives in other specialties, which is great. 
We are sending paper copies of RPV news to RPV admins in every renal unit, but you can download a copy from the foot of www.renal.org/rpv, or directly by clicking here. 

Online records access: No longer a minority activity

The number of users has risen by about 30% over the last 12 months; RPV now has over 17,000 registrations.  On an average weekday there are about 1,000 logins. 

But really good news is that 8 renal units now have more than 50% of their dialysis and transplant (RRT) patients enrolled.  Bristol is well ahead with 65%, almost two thirds of their RRT patients.  The UK only has 72 units, and RPV has only been available in many for a relatively short time, so that is an impressive result. 

Surveys repeatedly show that even in high-uptake units the most common reason for not joining is not being aware of RPV, or "I'd heard of it but I didn't realise it could be useful for me". 

The graph shows the rise in registrations in Salford when they decided to be more active about recruitment.  It looks as if the number of logins per person went up too during this drive, suggesting it was reaching existing users too, though it's early to say that for certain.   

YouTube 'How-To' videos for RPV

We've made a new page at www.rixg.org/rpv to help explain some simple things to new users, and some new or more advanced features to existing users.

1. Your comments welcome.  
2. Ideas for what else should be shown?
3. Your own videos welcome too.  Some videos of what you think, how you use RPV particularly welcome.  

(Thanks to Marone and Flora)

www.rixg.org/rpv

Where you can get RPV

RPV locations August 2011

We've updated the map showing where you can get RPV.  It now shows the centres that don't have firm plans yet (the white flags).  Some of these are paediatric units which may not have an electronic records system to base it on.  Others - ask them!
The link above is to the map in the RPV info pages at www.renal.org.  Go to the full Google RPV Map here.

Emergency access to RPV by others

Many people already share their login with staff at other hospitals, surgeries, or units.  Some people have asked whether it could be made possible for others to see your RPV records in an emergency, at a time when you aren't able to give permission because you are too unwell.

Would this be a good idea?

Alternatives:  show your RPV login in a card in your wallet, or even on an alert bracelet/necklace.

If we were to build it into RPV, we would have to work out how to make it simple while keeping it safe, how to tell you later who had accessed it, and whether to make this available for everybody, or only those who wanted to.  

About Me

We just added 'About Me', with which you can upload a photo and show some info about yourself that you'd like your renal team, or other medical teams, to know.  You can also put in 'Things I'd like to talk about'.
At the moment you can print this out or show it online.  We may add a tick-box that would let you make this page viewable without a login, if you want.
Look forward to feedback.

Volunteers to speak about RPV?

Spokespersons for RPV

Sometimes we are asked for user comments on RPV, for example for the Press.  Questions such as, what it's like to use, why you use it, whether it would be good if other branches of the NHS could do the same thing.  Would you be willing?  If so, would you mind sending an email to renal@ed.ac.uk, including

• Your name
• What treatment you're on (dialysis, transplant, neither)
• Which unit you're from
• Best way to get hold of you

and we'll put you on a short list of people that we can contact.  There might be some questions because of the meeting next week.  Thanks!

The pic is one of the latest that Beth Shortt did for Kidney Research UK.  There's another here and here.