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.  

New - Enter your own ...

You can now enter your own Blood Pressure, weight, or glucose when you are logged into RPV.  See Enter my ... at the top.

These could be blood pressure measured at home, or at your GP surgery or elsewhere.  In the results tables, you can now see where each test result has come from. Things you have entered will be shown as from 'Patient'.
Within the week we hope to add Comments, so you can make comments about a particular day, or about your health, that can explain funny test results, or just as a 'blog'.

At the moment, all of this info is just on Renal PatientView, your renal team and GP won't know it's there unless you show and tell.  
Soon we want to test sending these results back to Renal Units and are looking for some units to be guinea pigs for this.  

How is your unit doing?

The graph shows the number of patients registered with RPV in each unit as a % of each unit's size measured by number of dialysis+transplant patients. Click on the image for a larger version.


The range is huge! Note that where it is at 100% that doesn't mean that every dialysis and transplant patient is using it - many patients who aren't on dialysis or transplanted use RPV too. About a third overall, maybe a higher proportion in some units with a high level of uptake.
But the rate in some units is really impressive - and congratulations to Guy's, who are the leaders.

The units are organised by approximated date of starting (year of start shown in red at the top), so it isn't surprising that the units at the right have lower uptake. They haven't had it so long.

QUESTION - why the big differences?
Answers below ... or we'll be really interested to have this as just one of the things to discuss this at the RPV meeting in September - see the post below for details. Hope to see you there!

Small print - this was calculated by looking at numbers enrolled on 10th July 2010, and comparing it with each unit's dialysis+transplant patient numbers from the Renal Registry report 2009. Note on Cardiff - only available for paediatric patients, adults soon we hope.

RPV Users Conference

Manchester Central Conference Centre

For Renal staff, Patients and all interested

• Over 13,000 users in 2010, logging in on average twice each month
• To see live test results and info on the Internet
• A pioneering project driven by the UK Renal community
• Uptake, impact and future
• Updates, masterclasses, 'What I'd like to see'
• Parallel patient and staff sessions in the afternoon
• Free registration but numbers limited, so
• Express interest by emailing renalreg@renalreg.com

Programme and further details can be found here

Forum now open on RPV

When logged in, you can now post comments to a discussion forum in RPV. Open to users only. Please use it and make comments.

Does anyone know if there is a very simple guide somewhere for people new to this kind of forum?

Should we add hepatitis, MRSA, HIV results to RPV?

Haemodialysis patients find it difficult enough to travel without extra obstacles. One of the problems is getting up to date enough results of Hepatitis B and C, HIV, MRSA.

It has been suggested that a simple solution would be to post these on RPV, though we don't yet know how many units could easily do that.

Should we? Relevant comments include:

• Renal patients are used to having frequent Hep B and C and HIV and MRSA tests, it isn't a very big deal for them
• The chances of learning new bad news this way would be very small; if there was a change you'd usually you'd have had a phone call to get a re-test. But it might happen rarely.
• RPV users already know they may get bad news from RPV. The ability to see test results good or bad is is one of the major reasons they use RPV. Everyday examples are that they might discover worse kidney function results, high potassium.
• A significant minority of RPV users require someone else to login for them
• The additional protection of an extra login step or caution would be minimal, and it would be annoying and inconvenient
• It's not just an issue for haemo patients. Some patients receiving treatment for hepatitis, HIV or MRSA would really like to see these results anyway.

LFT, iron tests - info at head of columns

At last we've updated the info you get when you click on the headings at the top of the columns of Liver Function Tests on panel 5 of results, and at the top of Iron results there too.
We've had several liver experts look over what we've written and they think it's OK. What do you think?
ANT

Liver function and iron tests added

On results panel 5 many of you will now be able to see various liver function tests and results for iron and uric acid (which causes gout). This is in place for almost all units that use 'Proton', but if it's not there for your local unit, perhaps your local RPV admin may know whether it should be there soon.

10,500 registrations

We've now passed 10,500 registrations. Sorry we missed the opportunity to offer a prize for the 10,000th user, but maybe we could look you up and ask to publish your photo.
The new results we mentioned a while ago are just beginning to roll out in some units.

Welcome Canterbury and RenalPlus

Canterbury has joined Renal PatientView and today has 2 patients enrolled. Welcome!

RPV is now working in units where their local renal computer system is based on Proton (Vitalpulse adaptation of CCL-Proton), Vitaldata (Vitalpulse), iSoft's Clinical Manager (Guy's and Salford units have adapted this locally), eMed (Mediqal HI), and Canterbury adds the first RenalPlus unit.
We hope that any remaining systems will link soon.
The photo of Canterbury Cathedral is licensed under Creative Commons

Patients online

Increasingly renal patients are writing online, as well as reading. Some examples highlighted on the UK Renal Association's newspages this week.
Soon we hope to make it possible for RPV patients to communicate with each other, and to add blood pressures and comments to their own records.
Happy New Year!

Strong Passwords

It is in users' own interests to use strong passwords. To help us all do that we have added a link to Password Meter from the password change pages. Please use this to help us keep your account and thus the whole site secure.

Rob Worth

New tests please

We hope to add these tests to RPV early in the new year:
bili, ast, alt, alp, ggt, ferritin, iron, transferrin, ironsat, urate
What else would you like? Some are difficult because they are recorded in so many different ways in different renal units, but we are also looking for a way to add occasional tests in a list a bit like the list of letters.

The RPV team were finalists at the BT-eHealth Insider Awards 2008, in the category 'Best use of ICT in patient and citizen involvement'.  We didn't win - but then we were up against two projects to do with sex education - but we had a great time. 

Keith Simpson, Neil Turner, Rob Worth, Maddy Warren, Andy Webb.