Friday, April 18, 2014

Graphs

When you click on Results, you are now offered a 'Graphic' option, or "see these results as a graph".  This is Creatinine for someone starting dialysis:
For creatinine, higher numbers are worse. So for this patient, things got worse, then when they started dialysis, creatinine fell, but now it goes up and down before and after dialysis.
When you hover over a point on the graph, the number and date appear in the pop-up.  If you click on the results title you'll link to info, like the creatinine info which tells you what 'normal' should be and what is different in patients with kidney disease.
Below the graph you can choose how long a period to show, and on the left you can choose which result to show.  Here are some recommendations:

  • Creatinine is a useful test for showing kidney function, but 
  • eGFR shows approximate % kidney function, so low numbers are worse.  

For most tests the scale up the side is non-linear - for example in the creatinine graph, 500 is quite close to 1000.  This is often useful to show important changes, but we're experimenting with options.
Please comment below!

Tuesday, November 12, 2013

Renal PatientView becomes just PatientView

The web address for RPV will change soon from renalpatientview.org to patientview.org.
Going to www.renalpatientview.org will still work, but it will take you to www.patientview.org. It will look the same otherwise and we haven't been hijacked! In fact patientview.org takes you there now. (Try it ... www.patientview.org)
This is because behind the scenes, one or two other specialties are very close to using our service now.  So we wanted an address that would work for everyone.
More about the other specialties soon!

Monday, June 3, 2013

How should we contact non-users?


RPV registration is well over 50% in a good few units, but some people haven't joined.  We know a bit about these non-users.  We also know that if you ask people why they don't use it, the most common answer is that they didn't know about it, or didn't realise that it could be useful to them.  You can read more in our recruitment toolkit

Next there are people who have asked for an RPV login, but have never used it.  This is a surprisingly large number, 15-20% of the total.  Others have used it just once or twice.  We know less about this group, and are undertaking some research to look at this.  But an important question is how should we approach them to offer help, and to find out why? 

We're thinking of writing or sending an automated message to say 'You don't seem to have used RPV recently/ at all/ for a long time.  Can we help?'.  Help could be:
  • point to videos that explain how (like those at www.rixg.org/rpv)
  • re-send a login with a letter and fuller instructions
  • offer a phone call if they ask for one
  • make a phone call anyway
  • or all of these, in a graded manner.  
We're imagining this would all be done in an automated way, or by someone not involved in clinical care. 

Does this sound the right way to go about it?

Friday, May 31, 2013

Secure messaging in RPV piloting now

We originally hoped the NHS would find a way to send secure messages between staff and patients, but it hasn't.  So we're testing it inside RPV.   It's piloting in Edinburgh at the moment, and if it works, next thing will be to talk to other units about switching it on, unit by unit.
It works by sending an email (or in the future maybe a text message) to tell you there's a message for you in RPV.  You log in to read it. Exchanges are recorded as 'conversations'.  So far so like Facebook. 

There are a number of problems to work through to get this going:
  • Should patients get a full list of all possible staff recipients (might be scores), or just a selected few addresses to send messages to?
  • If a few, how do you choose them, and keep those lists up to date?
  • Should staff recipients be individuals, or some kind of group address?  Things to be said both ways. 
  • If individuals, how is it managed when they're away?
  • Staff are concerned that it will ruin their lives.
  • This is definitely creating something more than is currently held in Unit records. We've been cautious about doing that.  
Staff will need to use RPV more.  That's probably a good thing, we hope they'll appreciate how useful it is to patients.

Support to test this idea is coming from an EU Grant ('Sustains') in which the Scottish Government is a partner.  So the first pilots are in Scotland, but if successful anyone can have it.  We'll report back.

Monday, May 6, 2013

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. 

Wednesday, May 1, 2013

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. 

Saturday, February 23, 2013

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 

Wednesday, February 6, 2013

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

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
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

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 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.

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 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.  

Monday, July 30, 2012

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.

Tuesday, May 22, 2012

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!

Sunday, May 20, 2012

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.

Saturday, May 19, 2012

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.


Wednesday, October 5, 2011

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

Wednesday, August 31, 2011

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.   

Monday, August 15, 2011

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