MPN Voice App for monitoring symptoms

[gset]

I have recently started to use the app,! I have to say how easy it is to use. Recording symptoms is so quick and handy and I even added my own. I added all my recent blood tests easily too. I think it will help us patients all provide a good record of how we are feeling to our medical teams and help ourselves remember all those niggles we often forget to tell them. There’s lots more too in the app, information etc. it’s so easy I would encourage everyone to give it a go. Well done MPN Voice team for developing such a useful app.

[Fivecatsandcounting]

Totally agree it helps to give true insight and is so easy to use. So grateful to the teams behind developing it and feeling really proud to be part of a study to help others for the future too. I couldn't see anywhere to record red cell count and it isn't pulling across ECG results. Not sure if I have missed something at set up or it's something in place for future. Monitoring the symptoms is a great visual and I can already see a pattern and also have an increased dose of Interferon is affecting me. Will be interesting to see what happens as I settle in to a higher dose. Thank you so much MPN Voice. Forever grateful to you.

[Debinha Administrator in reply to Fivecatsandcounting]

Hi Fivecatsandcounting,

Great to hear that you are enjoying the app and finding it easy to use.

No, RBC is not recorded, Haemoglobin and Haematocrit (or PCV) are recorded. Regarding the ECG have you done a recording through the watch? Once this is done it should show up after the overnight update.

[Fivecatsandcounting in reply to Debinha]

Hi Debinha thank you for replying! Yes I have done quite a few ECGs through the watch and none have come through on the app. I get loads of palps and it has picked up 2 afib readings (cardiology are aware I have this issue and are trying to find out why ..) so it was interesting to monitor to see if there is any commonality or correlation to PV, blood or drug status. I can't see if a setting needs changing but maybe I should contact Sanius? The app and watch link is brilliant thank you

[Fivecatsandcounting in reply to Debinha]

Update: I just rechecked the app and the readings are now showing and have backdated each day too ..

[Debinha Administrator in reply to Fivecatsandcounting]

That's great news thank you for letting us know!

[Leonardo]

I would very much like to use the App - how did you get it?

RA

[gset in reply to Leonardo]

you just download it from Apple or Google depending upon which phone you have . It’s called My MPN voice

[Leonardo in reply to gset]

Many thanks for your help.

R.

[Debinha Administrator in reply to Leonardo]

Hi Leonardo - Thank you so much for your interest, Please send an email to [e-mail] and we will send a link for you to get further information and sign up.

[Exeter21]

can you give me quick run down how to find this as currently not found it Julia UK

[gset in reply to Exeter21]

You just type my mpn voice into your App Store whether that’s Apple or Google play and press the search icon. In Apple it shows up straight away . You can tap and install if you have a smart phone or iPad etc.

[Debinha Administrator in reply to Exeter21]

Hi Exeter21

Please send an email to [e-mail] and we will send you information and links to register. In the meantime please watch the patient forum webinar - My MPN Voice App posted by Maz a few days ago it will give you lots of very important information.

[Exeter21 in reply to Debinha]

Ok fine . I filled the form in at the conference to receive it but will do again thanks . Julia . Exeter Devon UK👌

[mark382]

Just downloaded the app. I think it asks far too much personal data, and if I understand it correctly it wants me to agree for Sanius to access my hospital and GP records and keep my data on their platform. Who are Sanius. Why do they need all this data if its just an app to keep a record of results or symptoms. I don't need one of their health managers to contact me. Sorry to be negative, but there are too many people asking for personal data these days. Rwading other people's comments ut doesn't record RBC, which for me is the most important result. Haemoglobin in my case doesn't always follow hematocrit. Afraid I've deleted the App.

[drakelet in reply to mark382]

As I understand it currently they are recruiting people onto a study involving the app which requires them to ask for this information. I agree that this is not well communicated within the app. My understanding is that at some point in the future, the app will be made available for people not on the study, and will therefore not require access to these records.

[mark382 in reply to drakelet]

Thanks. No it isn't well communicated. I thought it was part of MPN Voice which we all trust and is a reliable source of information.

[Debinha Administrator in reply to mark382]

Hi Mark - I would urge you to watch the pinned patient virtual forum - My MPN Voice app,

It will answer all your questions and give you some very important information regarding the study which is being conducted in partnership with Guys and St Thomas', Sanius Health and MPN Voice. Claire Harrison talks about her wish list as a clinician who is trying to work with MPN Patients and others to move forward MPN care and then why the app study is a huge step towards this.

If the study is not for you, stage 3 of the roll out will release a light version of the app in the UK Patients and stage 4 Globally.

[Exeter21 in reply to Debinha]

Thanks for that I will watch Maz nice to know it is the one spoken of at conference in London last Autumn but I waited for email of roll out hence suspicious as heard nothing. Thanks Debinha 👌. Julia .

[Exeter21]

Same here I thought it was created & managed by our site . I already share my information between the two main hospitals that treat me . I am afraid I get too many MPN messages asking for donations which are not our trusted site .

Hence cautious on this app 👌.

[Debinha Administrator in reply to Exeter21]

Hi Exeter 21 - Please see my reply to Mark above, Please watch the virtual forum My MPN Voice App which is a pinned post Maz put up a few days ago, It explains the various stages and releases of the app, with study and without study.

[mark382]

Thanks for information. But if it doesn't include RBC, then I'll give it a miss. Plus too much personal data to a third party. I'm more than happy with my haematology team. Thanks for pointing out virtual forum.

[LittleLuna]

I too have the app and the watch and love it. I highly recommend it for tracking symptoms etc. The watch is an extra good bonus, getting used to it as I am a Fitbit nerd 🤓

Thank you to MPN Voice an Sanius for this amazing opportunity. Looking forward to the data and support that will come from this in years to come.

Really blessed to have so much research, support and networks in this MPN world we are members of. 😀