"Patients Know Best"

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Thumps
Posts: 1303
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

"Patients Know Best"

Post by Thumps »

How are other people finding this forced transition away from PatientView? I'm so disappointed, so far PKB and the UK KIdney Association have done (imho) a really crappy job of providing a service to us kidney patients when PatientView was so good!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: "Patients Know Best"

Post by JMan »

Its absolute shite

I've been on one or 2 of the 'feedback/patient participation workshops. (about 150 people on).
https://youtu.be/zOQmrb5-O30
CRINGEWORTHY Basically going over and over their 'sales pitch' of how it works at the moment.

I was due to do a 1to1 with one of the team of PKB but they arranged the event in the wrong time zone (so I was ready for 1PM and they were running it on teams at 11 AM!) TWATS.

They are 'supposed' to be be taking on comments and supposed to be be bring on changes to the interface to make it similar to PV or easier to use/layout etc. But no timescale or dates given as yet.

The fact that it now takes 5 or 6 clicks to read each result, and lack of simple table/export views are part of the issue.

Its like facebook, you can only see 1 or 2 posts (which is what THEY want).

I've also queried how it, as a product can be so crap considering it was launched in 2008!

Keep an eye on KCUK /NKF etc for further events etc.
I've told my unit that I now only bother to check maybe 2 results such as Hb/potassium.
Thumps
Posts: 1303
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: "Patients Know Best"

Post by Thumps »

Glad it's not just me who is so unimpressed! Wonder how much kickback the UKKA could be getting??
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: "Patients Know Best"

Post by JMan »

A lot!
Another issue is updates are slower.
Usually with PV I'd have my results by now. Samples at the labs around midday yesterday, as we take them straight to the lab! I'd have a notification waiting for me in the morning. Sometimes Same Day!

This morning, nothing!
The bloody thing is 13 years old !
lashy
Posts: 69
Joined: Fri Mar 09, 2007 11:45 am
Location: cumbria

Re: "Patients Know Best"

Post by lashy »

We still access PatientView, even though on the homepage it says it has been moved to PKB...We just clickmon results, as per the last however many years, and results are there.
wagolynn
Posts: 1367
Joined: Thu May 23, 2013 2:49 pm

Re: "Patients Know Best"

Post by wagolynn »

Hi All,
First I thing the name is a very poor choice - If you want to speak to your medical team, the conversation has to start with, "According to Patients Know Best my blood results are ...". Not a very good start, they will have their back up before you get to your question.

Presentation - They have recently started to show results in a similar form to the old PV format.
But the graphical presentation is unclear, they are graphing pre and post dialysis results in the same graph resulting in a saw tooth graph.

When I lived in Norfolk, Addenbrookes would not use PV, I got my results for the pre dialysis bloods as a printout, I loaded these into a graph for each result.
The graphs were built in Excel, each result had it's own graph, the vertical scale was set to cover the normal working range of that item, and the graph had the upper and lower limits (I used red for high and blue for low) looking like tram lines.
This then allowed me to easily see what adjustments I need to make to my diet if any, and importantly I could see the trends.

Why did I do this?
I thought, I could eat my normal diet, then using the blood results, adjust the diet to get within the tolerances, it worked fine I have been dialysing now for 12+ yrs. proof of the pudding ...

I don't think the post dialysis results are of much if any use to us, I suppose it could be argued that the average could relevant but, as far as I know, the upper and lower limits are for the pre dialysis blood results.
Oldboy
Posts: 4
Joined: Sat Jul 08, 2023 1:21 am

Re: "Patients Know Best"

Post by Oldboy »

Patientview was brilliant, clear and easy to understand, I find PKB difficult to navigate and hard to understand.
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: "Patients Know Best"

Post by MatthewC »

It seems to be one of those things that often happens in the modern world: start with a system which works, don't bother ask users and then "improve" it for the worse! My bank has done it as well - the old sensible presentation of my statement has gone to one with lots of white space and very few transactions per screen. :(
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: "Patients Know Best"

Post by JMan »

I thankfully exported my entire KPV database before the closure.. But of course it only contains that historical data.. Still useful, and much much easier to refer to..

What insults me is that the founders/creators have been been awarded for what is, a very low quality product and supposedly a 'social enterprise' or something!
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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