New support site

We have a new support site to go with PV2. help.patientview.org has how-to videos (short link to those is help.patientview.org/rpv) and new guidance for units, unit admins, and potential new specialties and hospitals.

Comedy

Nice video from Portsmouth with a bit on PatientView.  It's classified as Comedy - not sure about that ...

PV2 goes live today

Results not quite caught up to date yet, but almost all there, today we present PatientView 2.  At the time of posting the new version isn't visible everywhere, but it should in the next few hours.
Note: up to date results are catching up, hope they'll be nearly complete at some point tomorrow.

Further information and some How-to videos at www.rixg.org/rpv, or our our YouTube channel.  (More videos to follow, but could you make some?)

There's a new Guide for Unit Admins and another place for news - good for all, but with a slight staff leaning as this site is often blocked by NHS IT.  

What's different?  Why?  See More about PV2 

PV2: Please try it out now

Existing PatientView users can now log in to the Staging version of PV2 at staging.patientview.org.  It has real data up to early December.  Please test it!

• You may be asked to change your password the first time you log in.  That will only change it at the staging site, not at 'live' www.patientview.org.  Passwords need at least 7 characters in PV2.  
• Results at staging.patientview.org are complete up to early December, but are not being updated. (Go to patientview.org still to see new results.)  

We'd love to hear your feedback.
WHY? see last post.  

It works pretty much like current PatientView, but you'll spot some differences. In particular:

• The first view of Results shows a lot of numbers but not a table.  This is to make it work well on mobiles.  
• You can get to a table by clicking on Table View - and now you can choose what you see there, and in what order.  

• Graphs - get to these by clicking on 'View more details' under each result.  Choose what period to show by clicking on the buttons at the top or using the sliders at the bottom.  We think they're much better, what do you think?  

Click on 'About' for more info about the test.
Alter what the graph shows using the sliders (arrows)

• Info links are now under My Conditions.  If you have two conditions (e.g. Renal and Diabetes, and have joined both) you'll see two sets of info links, one for each.
• Transplant status, Other Conditions are now under My Conditions.  

We are fixing a few glitches 

• Decimal points in some results not right.  
• The view on a good-sized tablet should be fixable to look like the big screen version instead of like the mobile phone version  
• We'd like graphs to be able to show two things together.  You choose which two
• GP logins need a better fix and that's quite a lot of work
• Transplant status isn't there.  That needs some work, hope it should be ready in time for 20th.

Please post comments below!

PatientView 2 is on the way!

PatientView gives over 30,000 renal patients, and some with diabetes, immediate access to test results, letters, and other info. 

It may have seemed quiet here recently, but behind the scenes we've been doing a huge amount of work.  PatientView2 (PV2) is on the way!  We're aiming for December launch.  First-look screens:

Why PV2?

• Half of logins are from mobiles or tablets, but PV1 doesn't work well on mobile devices.
• PatientView was written 10 years ago for a pilot project.  It's grown much bigger and it is proving a strain to get the old system to do all the things we're asking it to do now.
• Some other specialties are joining us, and we need to sort out how to show them best.
• There are lots of exciting things that PatientView could  do, but it's been difficult to integrate them.
• It should do all the things that existing PatientView does, plus more, and better.  

Help us with your comments

• Your comments are very welcome below.  We will be speaking to a few of you individually over the next 2-4 weeks.
• An important Q is how to show numbers in a way that works well on small as well as big screens.  We know that new test results are the usual reason for logging in when you do.  Here are initial ideas.  How badly do we need to keep the old 'big table' view of current PatientView?  (it could be possible to add it later, but with the extra info we want to provide it will be a difficult format even on a large screen)

Results home.  There is one result per box.

When you click on one of them you get a list of all the previous values, more info and a graph

Further info

• More info and questions about the PV2 project will be posted here. 

GP medicines on PatientView

We're about to test a link to GP drug lists, so we'll be able to show what your GP thinks you're on as well as what your Unit thinks you're on.  This is being tested in a few units first - list to follow of who's in line.
If it's working in your unit you'll see a notice asking your permission when you log in.  You'll see it again on the Medicines page (and you can change your mind there too).

This could be really useful for staff in Renal Units too, who often can't see this info.  

If this works, next thing we'll do is make it easy for you to tell us what's wrong with the lists. 

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!

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!

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?

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.

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
• 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

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.  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.