Help: need to find a computerised way to keep liv... - LUPUS UK

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Help: need to find a computerised way to keep live records of my lab test results

EOLHPC profile image
17 Replies

Hello all...has anyone found a user-friendly way of doing this? Some way that is totally digital (involving no scanning of manually kept records)?

Yesterday at immunology the consultant urged me to figure out how to keep a live digital lab results record...she wants me to try to stop entering my lab results in the little booklet my hospital has given patients for years. And I would vvvv much like to do this. Partly cause my handwriting is awful & the spaces to write in results are tiny. She told me about one of her patients who is able to hand her iPad over to whoever (e.g. Whatever consultant she is seeing at that moment) opened up to digital forms she keeps showing all her results up to date

I'm not great with computers...I've tried searching online for something....but I've totally failed

Have any of you succeeded?

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EOLHPC profile image
EOLHPC
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17 Replies
farmerfester profile image
farmerfester

Dose your nhs trust not keep your test results -bloods test etc this way along with your medical records your gp security could copy to a memory stick if you supplied her with one .

Just a thought g

EOLHPC profile image
EOLHPC in reply tofarmerfester

I'm a typical long term complex multisystem condition patient of 61. My treatments are carried out between at least 3 NHS hospitals involving several trusts + several far flung private hospitals...these all give me hard copy of lab results because they only keep their own records. I do attend one NHS GP surgery, which manages just to cope with the lab records of the tests they organise. In my experience, the NHS isn't capable of coordinating all this into one sort of spreadsheet-like form for complex patients like me who are having so many tests done on a regular basis at different labs... So all my Drs (gp's, consultants etc) have been relying on me to have up to date lab records in my possession when I attend appts....which means I turn up with lots of printouts + the little booklet I enter results in. It's messy

My Drs all seem to think that relying on me to coordinate this is realistic & reasonable....I guess this is the way it is for patients like me

My challenge is to find a blank digital sort of spreadsheet-like form into which I can enter at least my bloods results (FBC + haematology tests + immunology tests etc), but also a form that I can enter the lab results from tissue samples, urinalysis etc

cpidoc profile image
cpidoc in reply toEOLHPC

What did you decide to use?

EOLHPC profile image
EOLHPC in reply tocpidoc

Couldn’t find ANYTHING that would work for me…& this thread was 6 years ago: have continue my search ever since. Basically, my case has turned out to be complex enough to make using any app way beyond my talents as an archivist 😉

Fortunately now my 2 main hospitals & GP surgery have patient portals where I can see SOME of my info….the Univ Hosp where I attend my lead clinics (immunology, rheumatology, Gastroenterology) has MyChart, and our smaller local hospital has a more basic version of portal. My Surgery uses askmygp. have you found anything that works for you?

EOLHPC profile image
EOLHPC in reply tocpidoc

Here’s what I do…

With GP’s agreementbeen archiving my health saga …covers 68 years, past 11 in most detail
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Do you have a smartphone or tablet? Have you tried investigating if there are any apps that are able to do this for you?

EOLHPC profile image
EOLHPC in reply toPaul_Howard

Exactly! Yes, I've tried my iPad App Store...but am pretty useless at figuring out the right words to put into the search function....my husband just suggested 'lab blood test results template'...so I'll try that next...

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toEOLHPC

There seem to be a few apps that will do what you need, each with slightly different features. Here's a site which lists a few of the 'best' which you might want to take a look at;

appcrawlr.com/ios-apps/best...

EOLHPC profile image
EOLHPC in reply toPaul_Howard

Oh My Gosh: thanks so much Paul👏👏👏👏👍👍👍👍❗️Will let you know how I get on

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toEOLHPC

No problem :) Yes, if you find a good one then please post about it because other members may find it useful too.

EOLHPC profile image
EOLHPC in reply toPaul_Howard

Will do!

tired18 profile image
tired18 in reply toPaul_Howard

They are several apps PatientsLikeMe allows you to keep all of your data together it's very similar to this site in respect that you can share your results with other specialists or researchers (confidentiality)

EOLHPC profile image
EOLHPC in reply totired18

thanks tired. i'll check PLM out soon. yesterday i did my best to look at the apps via paul's v helpful link. oh dear: so hard to decide which app to try...the reviews are not encouraging....and most seem to be more oriented towards USA patients than UK patients. i do have a lupus friend who is also being treated by immunology and, i've been told, is keeping her records digitally...will see if i can find out which app she uses....

EOLHPC profile image
EOLHPC

Update: this week I saw my friend...she looked totally blank when I asked which app she uses to record her lab blood results...turns out the immunologist was mistaken...she must've mixed her up with someone else...so, am still on the hunt for the right app: something reliable & designed for UK patients...

EOLHPC profile image
EOLHPC

Another update...that same friend has sent me a book via Amazon that goes some way to helping with records:

Symptom Journal: CFS / ME / MS / LUPUS

Fatigue and Symptom Tracker

copyright 2014 S. Strongheart

This book provides templates for aspects of our conditions

See what you think...

MomsChronicRide profile image
MomsChronicRide

I have been considering building an app on my own. My records are so long that I have wanted to do it for years. One day soon, I hope. Good luck!

EOLHPC profile image
EOLHPC in reply toMomsChronicRide

Exactly...please let us know when/if you get your app in action!

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