Is this the future?

JMan · Post by **JMan** » Thu Dec 09, 2004 11:35 am

Is this the future of Renal Care & IT?

https://www.renalpatientview.org/

Looks good even in its trial form.. I for one would love to be able to log on & see check my results..

What do peeps think??

J

Doolally · Post by **Doolally** » Thu Dec 09, 2004 12:15 pm

That's certainly the way forward! Imagine getting your test results just like that - a dream come true!! It would be great when people are first diagnosed - I for one spent four years in a state of complete naivity.

Well designed site too.

Let's hope the ball is rolling at a reasonable speed!!

debbie · Post by **debbie** » Thu Dec 09, 2004 12:18 pm

It looks very good, would be nice to have my information to hand when I want it. Hopefully it won't take too long, suppose next thing is to get our units to sign up!

Mike · Post by **Mike** » Thu Dec 09, 2004 4:13 pm

thats great!

My unit has just had installed lots of expensive new computers so hopefully this will be next?

Mike · Post by **Mike** » Thu Dec 09, 2004 4:21 pm

actually I've changed my mind...not sure it's such a great idea as when my Pt & Phos are too high I won't be able to claim i didn't know

LadySycamore · Post by **LadySycamore** » Thu Dec 09, 2004 4:44 pm

Wow this is neat J. *thumbs up*

Wonder how we can get this here in the US...

R30 · Post by **R30** » Thu Dec 09, 2004 7:40 pm

Hi JMan

That looks great - and about time. I have to travel a hundred mile round trip to get my test results so this should save me a lot of time, effort and money, if Southmead are interested. I have my next appt. on Monday so will present this to my Cons. to see what he thinks.

Would be great if those who can use this system (when it goes live) could keep us all updated with their opinions of the site and info available. I am assuming that ones own information will be confidential i.e. it won't be available to everyone that logs on......?

BTW Happy Christmas to you. Doing anything nice/exciting/wild? (If it's wild, let me know - I may just join you!)

Ruth

JMan · Post by **JMan** » Thu Dec 09, 2004 8:13 pm

Yes the idea is that the info is shared between 'you & your team' and that you have a record of correspondence etc.. I too may take it into my unit at my next appt and I've already passed it onto our pre-dx nurse and renal counselor (this being a leaflet that the Renal Information Exchange group has produced)

Just interested to see what a wider, 'web using' renal audience thinks of it. I'm sure the developers would value our comments as 'end users'. KPG seemed an ideal place being so well used as it is

@ Xmas

Hopefully, higher forces willing, I'll be on a beach in N Wales, near Porthmadog

http://www.cottages4you.co.uk/uce/c4y?v ... rtyTypeId=

(Mad I know but my bro is into doing this sorta thing

http://www.flexifoil.com/community/gall ... ion=images

Nutter.. I may be having a go on the buggy, if not just doing a little light static kiting..

So whether thats wild or no.. well lol..

There's a small chance we may have room in the house we have as well.. that all depends on a certain small person though

Now in January there's a party, but thats another tale

Hehe

Hal · Post by **Hal** » Thu Dec 09, 2004 11:08 pm

Hello!

It does look very interesting. I've been in touch with one of the people on the team for Renal PatientView since I saw their stand at the NKF conference.

Its quite similar to the final year project and dissertiation I am doing at University, although the idea is that the system I am developing will be able to be a bit more intelligent e.g. your latest blood results indicate you have a high potassium, so information will be provided on how to reduce this. (although the system is only for research purposes at this stage)

I understand the system is only being trialed in 6 units at the moment. It works with the PROTON system most UK renal units use to extract blood test data etc.

About time some information was given to the patients,

Hal.

Bruce · Post by **Bruce** » Fri Dec 10, 2004 12:16 pm

This sounds great. I don't know of anything like it in the US. My blood work comes back to my unit via computer link from the lab, but my PD nurse says there is no way for me to access it. She gives me a printout at my monthly visit. The printout lists each of my levels along with the norms for that level and canned words of encouragement if the levels are OK. I have to keep all of these printouts in order to be able to compare them from month to month. --Bruce

George · Post by **George** » Fri Dec 10, 2004 4:36 pm

looks interesting and it seems Leeds St James in in the trials...but I use Leeds G.I. although I am sure it will come under the Leeds & Bradford hospital trust. I will make enquiries in the morning.

Elaine · Post by **Elaine** » Sat Dec 11, 2004 12:23 am

Read the articles etc wot a gr8 idea to give renal patients some informed choice, autonomy independance/ involvement in their own renal health matters ir blood results etc. Sooo frustrating speaking to answer machines or nurses Drs that are just too 'busy' to give out blood results. Like waiting for bingo to be called!!!!!!!!!! LOL

Did briefley discuss with our unit the advantages of this service etc who knows may happen 1 day at our unit - fingers crossed. Gotta be a way forward for The NHS.

best wishes Elaine UK

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