Tuesday, August 31, 2010

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.  

Wednesday, August 11, 2010

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.  

Sunday, July 18, 2010

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.

Thursday, June 17, 2010

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

Thursday, April 29, 2010

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?

Tuesday, March 23, 2010

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.

Wednesday, January 13, 2010

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?