Access to ICD data

All posts from Jan 1st 2011 to Dec, 31 2011

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flyingcamel
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Re: Access to ICD data

Post by flyingcamel » December 16th, 2011, 2:28 am

I think what Hugo wants is an iPad app (or some equivalent) to interrogate his own device. And I don't think that is unreasonable.

There is no doubt in my mind that that will happen. I am not saying this with any inside knowledge, it is just my prediction as a fellow health care consumer who also has all the latest tech gadgets - now including 3D TV as of last week :)

It makes sense and most doctors (all the good ones anyway) realize that.

I think that at this instant in time technology is simply outpacing the physician's and the industries knowledge of how to make best use of it.
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flyingcamel
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Re: Access to ICD data

Post by flyingcamel » December 16th, 2011, 3:22 am

JoeNH wrote:On the other hand, the device manufacturers have set themselves up with a reporting mechanism (topology) where the device readings are sent ONLY to the manufacturer, and then THEY share what THEY believe is relevant with the EP/MD. They could have set up a system where the device reader reads the information into YOUR own computer, for YOU to share with your MD, and for YOU to share with the manufacturer .... if you so elected.
Maybe I can set your mind at ease about a few things.

Technically the transmissions are processed and stored on the manufacturer's systems. But they go directly and immediately to the health care provider in full - not "what the mfgr believes is relevant". The end goal is getting the data to the doctor and patient.
<opinion> The mfgrs dont have an intrinsic interest the data. </opinion>
I can't make you believe me, but believe me - I know the history here. Be careful not to assign motives that weren't there. I think that it made sense technologically at the time (and we are talking late 90's when the CareLink concept was developed). Apparently no one predicted iPads.

There are a slew of privacy laws governing what the mfgr can do with the data. Rest assured that the only people that ever look at a report with a name on it are health care providers.
Last edited by flyingcamel on December 16th, 2011, 3:39 am, edited 1 time in total.
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flyingcamel
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Re: Access to ICD data

Post by flyingcamel » December 16th, 2011, 3:32 am

Another thing to realize....

Yes, CareLink has been in development 15 years to get where we are today.

Ever look at the programmer they use at the EPs office to interrogate your device? Again developed in the 90s. Looks absolutely primitive next to a modern computer.

ICD makers are a decade behind consumer electronics. Thank the FDA for that, I guess.

Maybe it's not all the FDA. Maybe there just hasn't been consumer demand ... hey! wait a minute, maybe Hugo is on to something :)

You guys just all sleep and I'll keep rattlin around here at 2 am and come full circle.
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Lianachan
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Re: Access to ICD data

Post by Lianachan » December 16th, 2011, 4:50 am

I don't have any remote linking for my ICD and nor have I ever met a company rep at my interrogation - if I did I would ask him/her to leave the room before we commence, I am certainly not giving them access to my private health data. I have my main 6-monthly cardiology clinic on Monday so I will add the question about data being forward to the vendor to my long list of questions!

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Suzanne
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Re: Access to ICD data

Post by Suzanne » December 16th, 2011, 8:42 am

Off topic, but related....even trying to get info from the Doctors and Nurses can be too frustrating.

I feel agitated every time I am in the waiting room, just before I have my ILR interrogated. I wonder which Nurse I will get.... I hate when I get a Nurse who tells me to "sit back". I don't want to "sit back"!! I want to watch the screen!! I want to see what's happening! I want to scream "DO NOT be annoyed that I want to know what's happening and that I'm trying to understand it all!!!!".

I hate that too many Doctors and Nurses feel we don't feel we need to know! A lot of us do better knowing!!

My frustration started from my first interrogation when I had my ICD. if only the Nurse would have warned me that she was going to increase my heart rate. I was already so stressed and scared at the time, that when she sped up my heart, the feeling of that, scared me even further! If she would have warned me and explained what and why she was doing, i am sure that I would have handled it much better.

After my last DFT (defibrillation threshold testing) testing, I awoke to the Doctor standing next to my bed, looking at my chart. i asked him how it went. He said "not good". I asked how many times I was shocked. He said I didn't need to know. Maybe most people don't need to know. I do!

I could go on and on!!! curserrr
flyingcamel wrote:I think the best health care providers realize that having the patient in the loop yields the most effective care.

So what is everyone so riled up about?
Because even the best health care providers don't think it's necessary to share the info.
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Re: Access to ICD data

Post by TruckerRon » December 17th, 2011, 12:17 am

Suzanne wrote:flyingcamel wrote:
I think the best health care providers realize that having the patient in the loop yields the most effective care.

So what is everyone so riled up about?


Because even the best health care providers don't think it's necessary to share the info.
I think you nailed it! And a large part of it is their perception of how much we can understand and how badly we will press them for it -- my wife is great at getting information about our most handicapped daughter's health -- she is tenacious and uses the right jargon. Her sister, a CPA and an auditor for the state, can't get straight answers from doctors until she goes all Xena on them.
:mutt:

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Re: Access to ICD data

Post by Ozchrissy » December 17th, 2011, 1:47 am

Her sister, a CPA and an auditor for the state, can't get straight answers from doctors until she goes all Xena on them.


Just love this, I will be having a Xena moment when I throw a hissy fit in future.

I think also that this issue of what we should or shouldn't know is part of the problems with me. I am sure my cardiologist was hiding out from me and avoiding me when I was forced to go and camp at his office, he knew I knew what was happening, and didn't quite know how to cope with my questions. They were too hard for him.

We on this board encourage each other to be aware of our own health, and to do our research. We therefore are not the 'average' patient, and I don't think the medical profession is really often prepared for patients like us. The fact that we can access actual medical journal articles with a google search has changed the way WE view our care. The doctors are no longer the only source of our medical information, and often they only deal with a broad spectrum of issues, often not very complicated, whereas we can investigate stuff that relates only to us. Therefore we often have questions that they just haven't come across and demand a level of care and knowledge from them that is often out of their reach. They will have a general knowledge of a condition, but not a detailed one. Also they tend to have a general aversion to doing their own research and will call another doctor or specialist. I have a folder of journal articles about an inch thick, with stuff relating to my present situation. I am sure my cardiologist hasn't even read one of these journal articles.
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hugooc
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Re: Access to ICD data

Post by hugooc » December 17th, 2011, 2:28 am

flyingcamel wrote:I think what Hugo wants is an iPad app (or some equivalent) to interrogate his own device. And I don't think that is unreasonable.
Flyingcamel, thanks for saying the above. But what I really want is for device manufacturers to recognize that the data they've been collecting via remote monitoring for years really belongs to patients, not to them. To deny patient access to our data is just wrong.
flyingcamel wrote:<opinion> The mfgrs dont have an intrinsic interest the data. </opinion> I can't make you believe me, but believe me - I know the history here.
Are you kidding me? Sorry, but I'm not buying this one. Manufacturers have GREAT interest in the data they collect via remote monitoring. Such data is of extraordinary value to manufacturers and is used for post-market surveillance of their pacemakers, defibrillators and leads (among other things). It's even mentioned by the Heart Rhythm Society as "as an emerging modality for lead surveillance" in their document Recommendations from the Heart Rhythm Society Task Force on Lead Performance Policies and Guidelines.

Back to your first point, while an iPad app would be a step in the right direction, even THAT wouldn't sway me from demanding full and unrestricted access to my RAW data. Which brings me to my second point: What I don't want is for my doctor, a device manufacturer or even government to determine what information I can and cannot access and how that information should be presented to me. (As it would likely be the case with an iPad app.)

It's time for data to be freed and shared with the patient who originates it. This is especially true in light of so many recalls and frequent product advisories.

It's about transparency, fairness, and patients rights.

For others interested in knowing more about my POV on this topic, see this link:
http://www.technologyreview.com/biomedicine/39167/

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Re: Access to ICD data

Post by JoeNH » December 17th, 2011, 8:40 am

Suzanne wrote:I hate that too many Doctors and Nurses feel we don't feel we need to know! A lot of us do better knowing!!

This is EXACTLY the problem !

The ICD model is all backwards. Under every other medical circumstance, the patient is in the driver's seat.

If the patient has a headache, the patient decides whether the doctor gets the information.
If the patient has high blood pressure, the patient decides whether to tell the doctor.
If the patient has high blood glucose, the patient decides whether to tell the doctor.

While some folks appear indifferent to the issue, I'd love it if someone could provide a justification for why the patient shouldn't have all the data.

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Re: Access to ICD data

Post by JoeNH » December 17th, 2011, 8:51 am

hugooc wrote:Manufacturers have GREAT interest in the data they collect via remote monitoring. Such data is of extraordinary value to manufacturers and is used for post-market surveillance of their pacemakers, defibrillators and leads (among other things).

Yes, yes, yes ! The first hint that there is value there is that they even bother to collect it. They're not collecting for the hell of it.

There are CURRENTLY at least two areas in which the information IS USED by the manufacturers.

The manufacturers have converted current ICD users into unwitting Guinea Pigs for future product development. Essentially, we are being used as the "clinical trial population" for future products.

Now I'm not saying that's bad. It's the "unwitting" part I object to.

Secondly, the data collected is used by the manufacturers to defend themselves in the event of product defect lawsuits.

But the BIG HOPE is that at some point in the future, they will be able to monetize the information. Think for a minute about how much all sorts of 3rd parties would be willing to pay for that information !

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Re: Access to ICD data

Post by JoeNH » December 17th, 2011, 8:54 am

flyingcamel wrote:Remote Monitoring (CareLink, Merlin, etc.) was not developed by the manufacturer's as a grand ploy to own everyone's data. It was invented to save time and money for patients and doctors, which results in better health care.

This just couldn't be further from the truth. It was invented for one reason and one reason only: PROFIT !!

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Re: Access to ICD data

Post by mrag » December 17th, 2011, 10:36 am

Joe wrote:It was invented for one reason and one reason only: PROFIT !!
Capitalist Republican! (but right, companies don't do nothing unless they make money out of it or the government forces them to and that part is not always a sure bet)

Can we backtrack a moment and restate the issue(s) of concern? Seems to me to be near or around:
1) What data don't we have? I already get an 11 page or so printout from my EP's interrogator whenever I ask. Is there some other data in there?
2) Do we want "on demand" access to this data? Do we want the remote unit to transmit directly to our pc's? My icd does a 'daily morning scan' for irregularities and sends the info to my EP. If there is a problem, I (in theory) get a call from the EP.
hugocc wrote:what I really want is for device manufacturers to recognize that the data they've been collecting via remote monitoring for years really belongs to patients, not to them
If I stand outside a grocery store and record what I see in your shopping cart, do I owe you my list? If I build an x-ray machine, what do I owe you, some interpretation of the picture, an analysis of your bone density, a guess as to what some dark spot in a corner means? Or do I owe the radiologist a crisp, readable x ray plate that he/she can use for a proper, informed, medically appropriate reading.

I already have my data, what's the point again?
nonsense area-does anyone even read this area any more

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flyingcamel
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Re: Access to ICD data

Post by flyingcamel » December 17th, 2011, 11:31 am

mrag wrote: 1) What data don't we have? I already get an 11 page or so printout from my EP's interrogator whenever I ask. Is there some other data in there?
No
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flyingcamel
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Re: Access to ICD data

Post by flyingcamel » December 17th, 2011, 11:45 am

hugoOC wrote:
flyingcamel wrote: <opinion> The mfgrs dont have an intrinsic interest the data. </opinion> I can't make you believe me, but believe me - I know the history here.
Are you kidding me? Sorry, but I'm not buying this one. Manufacturers have GREAT interest in the data they collect via remote monitoring. Such data is of extraordinary value to manufacturers and is used for post-market surveillance of their pacemakers, defibrillators and leads (among other things).
The data is extremely valuable - to everyone - albeit for different reasons. I never said it wasn't. I was making a pretty subtle point but one that I do think is relevant to the TONE of this discussion.

There were/are not people at MDT/BSX/SJM/BIO holding meetings trying to figure out "How can we get our hands on all that data? That's the ticket to what will make us really rich!! And no way will we ever share it with anyone because it is ours! And ours alone! Bwahahahaha!"

Can you at least grant me that?
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flyingcamel
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Re: Access to ICD data

Post by flyingcamel » December 17th, 2011, 12:14 pm

JoeNH wrote:
flyingcamel wrote:Remote Monitoring (CareLink, Merlin, etc.) was not developed by the manufacturer's as a grand ploy to own everyone's data. It was invented to save time and money for patients and doctors, which results in better health care.

This just couldn't be further from the truth. It was invented for one reason and one reason only: PROFIT !!
Profit comes from creating something that people want. They want it because it improves their lives. Profit and helping humanity are extraordinarily intertwined in my business. You make it sound like a bad thing.
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