questions about the medtronic monitoring app

Pacemaker implanted this April 7. Medtronic tech called me Friday April 23 and wanted me to get this app from Apple for my iPhone or iPad for communication with Medtronic and the cardiologists. I don't have an Apple ID and so have to wait for Apple to give me a log in to proceed. So I went to the App store and read some reviews of this heartcare app. Really scary. Around half the reviews were quite negative and most had the same range of complaints... serious connectivity problems... from difficult to impossible to either connect or stay connected or having the app lock one out of the phone or pad. Most of the negatives cited those issues. The other set of issues I found alarming are that this technology withholds data from the patient and the company tells those who ask that that policy is pushed hard by the doctors...

I was initially told that Medtronic was going to send me a device in the mail that I would plug into my broadband connection and keep by my bed that would do the monitoring and reporting. While I'm not happy about leaving any emf emitting device near me, that would still be my preference by far to having to leave the phone on all the time and risk the problems I saw so many of in the app reviews.

Any comments?

 

 


12 Comments

Medtronic MyCarelink Heart app

by ar_vin - 2021-04-26 13:03:59

I originally was sent the bedside monitoring device that you speak of - for me it was a total bust as it never sent transmissions as it was supposed to. As I researched this a bit I found out about  the MyCarelink Heart app that you speak of. It works on most recent iPhone models and a very limited number of Samsung phones.

I installed the app on an iPhone and it works infinitely better than the "bedside device". Like any smartphone app it's not perfect but it's functional for what I need it to do: send remote transmissions. I've been using the app more than two years with no issues whatsoever.

I could care less about most of the other "features" of the app - I personally have no use for them.

I'd be careful of reading much into the online "reviews". Many so-called reviewers are simply incompetent at using and understanding simple instructions. 

In any case YMMV.

As far as Medtronic "policy" regarding your data etc, whether you like it or not, you consented to it when you agreed to the PM implant. I'm not suggesting it's good or bad, it just is what it is. Petition your government if you'd like to see changes but don't hold your breath.

 

 

Medtronic monitoring app

by Dixie Chick 65 - 2021-04-26 13:46:29

I have used the Medtronic monitoring app since June,2020 with little problem. I prefer an app to a separate device for bedside table, etc. Back in January,2021 I had an issue with it ( it seemed to be “ stuck”) and a transmission was due. Medtronic customer service got it straightened out ASAP. Stellar customer service ! I have to agree with Ar_vin about our data being out there...That was a given when you consented to the PM. 

I don’t understand your comment about “ getting an Apple ID “ and having to wait for it ?? I’ve had one for quite a while but I thought getting the ID was a snap. I highly recommend the My Smart Link app. It does have about 6 “tabs “ that you can access. The main one I use is “ Activity “ level that shows you daily, weekly monthly activity levels. Also has one called “My Heart Device “ That gives all device related info, battery life, etc.

 

 

monitoring

by Julros - 2021-04-26 14:42:31

Regarding ar_vin's comment about consenting to the manufacturer managing your data, I don't recall that being discussed at all. My previous experience with monitoring was with my dad, who had a device that I plugged into the phone quarterly and uploaded data. I truly believe that having nightly uploaded data should be discussed with the patient, and tailored to their condition. For instance, my device has 10 years of battery, and I do not have ventricular arrythmias, so I do not think I need a third party mining my data nightly. 

Data

by Persephone - 2021-04-26 15:49:55

I thought all of the monitoring devices - regardless of communication technology - withhold data from the implantee.  I wouldn't be able to understand it even if they did provide it to me, but rather look to my medical team to interpret and summarize the findings for me.

Data. and monitoring

by Dixie Chick 65 - 2021-04-26 16:59:17

Starting with my first device check in June,2020 I have always requested and received the Summary sheet. There’s lots of info there such as % pacing, impedance, sensitivity settings, capture threshold, etc Recently I had an MRI and the device tech had to reset everything afterwards. When I told him I’d like a copy, he asked “ Why?” I told him because I wanted it and liked to have it. He obliged but thought I was a crazy old lady. Of course, the top number was impedance and I saw it had changed. When I mentioned that, he said “ See I told you !” I certainly have no clue what most of it is about but it MY data after all !

My doctor has always been very open to giving me what I ask for and on this forum some have taken a thumb drive and asked for their data to be downloaded. I haven’t done that but I’m pretty certain it can be done.

Medtronic

by Aberdeen - 2021-04-26 17:14:02

I have a Medtronic monitor which is plugged in beside my bed.I have to send a reading once a month.

I have found it useful as I felt unwell( 6 months ago fortunately )and had to go to A and E with a fast pulse,palpitations etc. When I was there I was told they were going to wait for a pacemaker reading. 

Then I was told there was no need as they had already received my reading that I had done at home before I went to A and E. Everything was normal. Fortunately I recovered from this episode. I don’t know what caused it.

Data mining

by AgentX86 - 2021-04-26 17:47:24

Medtronic isn't mining any data that your doctors don't already have. You don't realize that THE most common identity breaches come from medical institutions. HIPPA laws still apply.

Monitoring is found YOUR health. Most aren't monitored every night and those who are,  need to be. For the rest of us, data is transmitted once a month to once a year.

There aren't any privacy issues here that don't already have a hole big enough to drive a bus through.

The EMI "excuse" is a non-starter. The radio transmitter is in your pacemaker. It's  now part of you. The connection is no different than it is for the bedside box. In fact, once in a while my phone's Bluetooth radio will scan it and list it in the pairing list.

I agree with others here. The bedside  ox is a PITA. Medtronic just sent me an invitation to start the app. I'm going to do it as soon as I get some time. Then I'll send that infernal box back!

Maybe I'm Looking at The "Withholding Information" Differently?

by Marybird - 2021-04-26 20:35:30

But I always took that to mean that the pacemaker company will not disclose medical or other pacemaker information with the patient, as they will refer a patient to his/ her own doctor or clinic to get this information. They will tell you a remote transmission was successful and that's about it. 

As I understand it, there is also a MyCarelink app for Android phones as well as for Apple iPhones, I think my sister has a Samsung phone and uses that app for remote monitoring of her Medtronic pacemaker. She likes it and seems to be happy with it. 

Medtronic app

by Dixie Chick 65 - 2021-04-26 21:57:05

Hi, Marybird...I didn't mean to imply I got any of my info from Medtronic. The doctor and his nurse and the Medtronic reps are who I have received summary sheets from. I only talked with Medtronic about a technical issue and it was cleared up.

Dixie Chick

by Marybird - 2021-04-26 23:47:49

I knew what you meant, whatever information anyone gets in regard to their pacemaker, their own health will come from the doctor, clinic, or perhaps from a pacer technician who's working in that setting. You just won't get personal information directly from the pacemaker company even though that information is uploaded to the website ( secure) at their location, and made available to your doctor/clinic. Though as you mention, if there is a technical issue involving say, your monitor or transmission problems,  they could help you with that. Or, I'd guess, if you had technical questions about the features on your pacemaker, they could most likely answer those too. 

But they can't give you any specific information about findings on your transmitted monitor reports, for instance, even though they have that information. I'm thinking perhaps that is what Shiningwater meant when she referred to the company witholding information. I just wanted to maybe clarify that the company isn't deliberately doing that just to keep it from patients, but because it involves individual patient healthcare information and is supposed to come from the doctor/ healthcare provider. 

You will get there Shiningwater

by Gemita - 2021-04-27 03:24:28

Yes that is my understanding of this message from Shiningwater too that the manufacturer withholds stored information from the patient and this is supported by doctors . . . and for good reason.  It should be remembered that patient confidentiality would be broken if we, or worse, anyone else got access to our iPhones/other mobiles and were able to download a copy of the stored data, so this needs to be prevented/protected even if it is our data.

Shiningwater let us remember, we are entitled to have access to our own data, no one is saying otherwise, but this access has to be sought from our consultant in the first instant not from the manufacturer.  

Here in the UK we need to make a formal request to see this information but it is usually given readily, although in my case not quickly, due to COVID priorities, although perhaps I have asked to see too much - a complete download of all my data for the year ended July 2020.

Yes I too don't understand why an Apple ID is not readily available on registering for one Shiningwater?  It is usually a straightforward procedure once we have successfully completed the security questions and set up correctly our account.

The final point I would like to make is that it may be easier and beneficial to take your mobile into your pacemaker clinic when the App is downloaded onto your iPhone and get the technicians to set up the link with your pacemaker (to pair it with your pacemaker).  This is what I was advised by my clinic if I have any difficulties setting it up at home.  However I am still successfully using My CareLink monitor at the moment pending my return to clinic in early July when I will hopefully get the best App paired with my pacemaker.

Hopefully these are all teething problems Shiningwater and you will overcome them.  And let us not forget there are a few Apps available from the Apple Store, some better than others I believe, which is why I am waiting for guidance from my clinic.  Let us all hope Medtronic improve their hardware soon and that you can use their equipment at home but have the luxury of going mobile when you are away from home?

apple id

by shiningwater - 2021-04-27 10:40:16

I forgot my password and Apple has a waiting period of "a few days" to send a new link. They aren't the only ones to do that.. 

I appreciate all the comments. Not just because they are informative, but also makes this whole situation somehow less lonely/scary. 

Medtronic tech was not surprised... told me to call back as soon as I get new password and will then walk me through the download and whatever's next

Thanks again

You know you're wired when...

Your electric tooth brush interferes with your device.

Member Quotes

I am a 58 year old woman, race cars, ski at 13,000+ feet, work out daily, have become a second-degree black-belt in Karate, run a business - no limitations.