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Providing Patients with ICD Data directly
I am currently working on a corporate strategy assignment that has tasked me with creating strategy that would effectively increase the value propostion of a St. Jude Medical ICD.
One of our ideas involved a system that would provide ICD users access to their data directly via simple web based user interface equipped with tools and applications that would allow to somehow correlate data to the daily lives.
My Professor is constantly asking the question. Is there a consumer demand for this. Would it give St.Jude a Competitive Advantage?
Please provide me with your thoughts
23 Comments
YES and YES
by brucerob - 2011-12-08 07:12:02
One of the things that bugs me is that my interrogation reports are not easily available to me. When I've had my interrogation at the Arrhythmia Clinic they have readily printed out the report when asked. But when I have it done remotely it is much more difficult to get hold of a copy. I would also appreciate anything my Merlin is reporting between interrogations.
I have studied my reports and can understand most of what's there. It's helpful to me to look for trends.
So I say a big YES to both questions.
No Thank You
by SMITTY - 2011-12-08 07:12:07
Far as me personally, I can’t think of anything much more useless unless whatever is provided includes an interpreter. Because most of the data available from my pacemaker is not something that I am able to understand. Even if I did, why would I want it? That would be like me continuously getting EKG information.
My heart’s function does not change that often and when it does, if the change is significant, I need someone with real knowledge of the heart to tell me what is going on.
Smitty
good idea!
by jobal - 2011-12-08 07:12:15
I have a Boston Scientific ICD and I have to wait till I have a check-up every 6 months before I can get a print-out of how it is working so I think it is a great idea!
jobal
Give me my #$*&^ Data!
by sfbaywalk - 2011-12-08 08:12:12
Yes. I believe the company is ethically bound to give us direct access to our data.
True, we will not immediately understand most of it. But it gives us a framework to learn about ourselves, our gadgets, and our self-care.
Here's an example of critical data that the company has that they are now withholding from us:
One printout has a day-by-day graph. For each day, it tells how much time we spend at 80%+ of max heart rate, how much at 60%-80%, and how much below 60%. Time above 80% is what counts for our cardio-exercise.
Given that almost all of us have daily exercise as part of our self-care prescription. Given that external heart monitors typically don't work for us. Given that we have built-in heart monitors with sensitivity and accuracy that far exceed any commercial product we could buy.
Yes ... the only ethical path is for the company to give us our data.
For example, I swim on most days. But I cannot subjectively tell if my level of effort is putting my heart into the cardio zone for the prescribed amount of time.
If, for example, my heart rate is not actually reaching the cardio-zone, and that the company has that data, then their refusal to inform me that my exercise is insufficient is ethically no different that "forgetting" to tell people that they have serious and treatable disease.
Yes, I am drawing a parallel to the infamous Tuskegee experiment, and I find that ethical lapse damnable.
It's MY data!
by sfbaywalk - 2011-12-08 08:12:15
These data are routinely withheld from us by St. Jude, and often by our health care providers.
From an ethical point of view, their behavior is no different than if they systematically withheld our blood testing results. It is as if we are forbidden to know the results of our fasting blood sugar or cholesterol testing.
Indeed! If the company has information that can help us improve our self-care, and if they withhold that information, I consider the company to be liable for any and all premature morbidity and mortality that may result.
The company needs to be sued for the data -- it's for their own good, because a simple suit for the data now can protect them from a future massive liability.
One more point ....
by sfbaywalk - 2011-12-08 09:12:45
Any research study conducted by any person or organization using our output data .... That is research where the subjects have not provided informed consent.
Such researchers and their studies deserve severe censure.
The Medical Records Are Yours
by J.B. - 2011-12-08 10:12:09
Sfbaywalk,
I see from your bio that you live in the USA. So you are correct about the data being yours. The feds say it is your personal property and the doctor/hospital must provide you a copy of any medical records they have for you, if you request it. The catch is they can charge a "reasonable price" for processing, copying and dispensing that information.
St. Jude doesn't have the data stored by your pacemaker. That data is in the doctor's office or the hospital or wherever you get your checkups. At the end of each checkup the pacemaker memory is wiped clean as if left in the pacemaker, the pacemaker will just write over in the coming months. Unless I'm mistaken, a pacemaker will keep stored data for three month before it starts overwriting it.
Also, almost all of the info shown on a checkup printout is data such as the settings, lead impedance, remaining battery power, and stored information on any irregular heart beats you may have such as PAC, A-fib, PVC etc. You would not be able to get minute to minute heart function from the pacemakers in use today.
There seem to be some misconception about the purpose of a pacemaker. Its only purpose of a pacemaker is to keep our heart rate from going below a certain number. It is not intended for use as long term diagnostic tools. They have Holter monitors, Event monitors and maybe others for that.
I would urge anyone to take a long look at what is shown a pacemaker checkup report before getting to wrapped up in what secrets they think they may hold. The only thing I find mine useful for is to see what if any changes have been made in the settings.
YES
by ElectricFrank - 2011-12-09 01:12:29
I have a standing order that I get a copy of my report (and I request the full report) before leaving the clinic at each checkup. I also have a copy of the Carelink report mailed to me if it isn't an office visit.
It would be so much easier if I could log on view the data. I realize some folks have no interest in it and are even frightened at the thought of seeing it, but they don't have to access it.
I enter data of interest from the reports into an Excel spreadsheet where I can graph the trends in a way that mean something to me.
By the way this sort of thing is going to become more common. I'm an electronic engineer and get a number of trade publications covering medical devices. The whole field of Personal Medical Instruments is rapidly expanding. For instance there will likely be a personal ECG available in the next few years.
Hope this answers your question,
frank
J.B. ... the data do not magically
by sfbaywalk - 2011-12-09 01:12:45
jump from my heart to my doctor's office. The raw info is transmitted to the merlin machine, then transferred to St. Judes. St. Judes has multiple summative reports available to the doc for downloading.
I've seen one of the reports and, yes, there is a little bar graph for each day showing total time at this and that level of heart rate. The report I saw showed that graph for each calendar day within a single month.
I was able to compared the graphs to my own exercise logs. I could tell that my walking was not aggressive enough to get me to the cardio-zone, that my swimming was working just fine, and that my week of day-hiking in the mountains was a complete waste of time from a cardio point of view.
And that is precisely the kind of info I want.
You discussion of minute-by-minute data is irrelevant.
Calm it down
by ElectricFrank - 2011-12-09 09:12:25
From posts on the forum for all sorts of issues, setting, diagnosis, etc. it should be obvious that there is a wide range of knowledge about pacemakers. And that doesn't include the even larger population who don't visit the site, because they just want the doc to take care of things and they are happy.
So there is room for providing as much information as some of us want, and not pushing it down the throats of those that don't. It's funny, I remember when home BP instruments became available. The doctors were furious and raised all sorts of concern about patients having this information without a professional to interpret it.
them's my feelings,
frank
Competitive advantage
by IAN MC - 2011-12-09 09:12:34
Your Professor asks..would it give St Jude a competitive advantage in the market place ? In my view it DEFINITELY would ( the previous posts show how strongly we "consumers" want access to our data )
If I knew that St Jude happily provide the data and Medtronic don't then I would ask to switch to St Jude at my next PM replacement.But, and it's a big "But" ; the competitors would soon start providing the same service if they started losing market share !!
Data on its own is,of course, of no value unless it is accompanied by clear explanations of what it means.
Tell your Professor that PM manufacturers could do FAR MORE in the field of patient education. I worked in the Pharmaceutical industry and I could give countless examples of patient education giving a definite competitive advantage.
Regional seminars for instance ,with PM experts giving presentations to groups of PM patients ,could be a start . If you could generate " brand loyalty for your own make of PM what a marketing advantage that would be !
Ian
Maybe not !
by IAN MC - 2011-12-09 09:12:57
Re my last message, I would only ask for a PM brand switch if the existing leads could be used ! I'm not daft enough to ask to have the leads lasered out just to have a PM that provides data ! I bet the different makes of PM all have different connections ( like mobile phones ) ??
If this is the case then maybe uniformity in connections would give the best-marketed PMs a competitive edge.
Ian
JB - I apologize
by sfbaywalk - 2011-12-09 10:12:09
for agreeing with you. Will avoid doing so again.
Sfbaywalk, Thank You
by J.B. - 2011-12-09 11:12:01
Sfbaywalk, thank you for letting me know that my comment was irrelevant. I see I have joined a large group of people at the pacemaker club by posting something that is irrelevant. I guess we can be thankful that we have brilliant people like you posting only pertinent facts and keeping us dimwits on a straight and narrow path.
It has always been a mystery to me how people like you with such large brains and brilliant minds can even stand upright.
Absolutely
by Ed_H - 2011-12-09 12:12:00
Personally I would very much like to have access to the info in as near real time as possible, and would be willing to pay for it if necessary. Obviously people have different attitudes about these things, but I think there are many who would be very interested.
You ought to ask here, too:
ICD forums
Ed
Sfbaywalk..why not sue everybody? !
by IAN MC - 2011-12-09 12:12:24
Sfbaywalk..I look forward to your separate battle with JB
....but your view that we should sue the PM manufacturers reminded me just how litigation-crazy you Yanks are. Regrettably this is spreading to our side of the Atlantic and one thing is for sure..we, the consumers, lose out in the long run with increased prices for commodities and services not to mention insurance premiums. Why don't we , at every opportunity, tell the PM people what we, the patients would like and then we may get a win-win situation
Ian
BP Monitoring
by donr - 2011-12-10 08:12:32
Frank, your comment is appropriate, but you left out the part about MD's wanting us to monitor our BP frequently now that we have access to monitoring equipment.
Another barrier to self testing that will eventually fall is the home INR device. They already exist, but are not yet common. I sure would like to have one to save trips to the hosp/lab & the interminable wait for the results from the Doc's office. Many times I get the results from the vampire that took my blood (Under the table, of course) because the notification system takes too long for the results to be useful at modifying my rat poison nightly dose.
I'd really appreciate getting access to my PM data if I were connected to an automatic monitoring system. As it is now, I get results many months after things happen - like a bunch of PVC's. Sure would be nice to be able to correlate their occurrence w/ my activities of daily living!
According to discussions w/ my cardio's head nurse, it would help them treat patients more effectively if they cared about this data & were cognizant of it. The patient who doesn't give a rats' tail about their own situation drives them to distraction. Those patients end to be less rigorous at following instructions, taking meds regularly & reporting occurrences of unusual events.
Yep
by ElectricFrank - 2011-12-11 02:12:11
Another factor is that they are lengthening the time between checkups in the last year or so. After getting my replacement I had one checkup in 3 months,and then the next one is scheduled for a year. If I didn't have my own ECG to check up on it I would be complaining, but as it is I'm OK.
If I could run a phone check monthly and see it on a web page it would be great. The whole process could be automated on their end so it wouldn't be expensive for them.
Not only that but it might give the cardio's more time to deal with the patients that really need help;
frank
Giving the Cardios more time...
by donr - 2011-12-11 08:12:57
...would really help them out - IF they really know PM's & all the nuts, bolts & itty, bitty screws involved.
I'm lucky - my cardio has at least three women on his staff who can do a lot of triage for him & take care of a lot of routine, petty problems for him. Two RN's & a cardiac certified PA. Sure is nice to be able to get answers to questions & bring potential issues to their attention w/o having to wait months for an appt. Also has at least one downloading computer available.
I can remember the first time I saw his PA. She was greener than an avocado - MOF, I knew more than she did about my PM. Cardio had his head nurse sit in w/ PA while she got some OJT on PM's. She was a sharp cookie, & learned fast. Dunno what it takes for a PA to get certified, but till they do, they are pretty rough around the edges. She is rightfully proud of that -C behind her PA on her white coat.
Lead time for getting to see him is about 4-5 months, minimum. PA lead is about the same. They are saddled w/ all the periodic follow-ups. Nurses you can get on the phone at least on the day you call.
Frank, you are the cardio's best dream - you know what it's all about & can take care of yourself on routine issues. There aren't many who can do that!
Don
Access to ICD data is every patient's right.
by hugooc - 2011-12-12 04:12:48
Yes. There's demand for it (just take a look at the emerging Quantified Self movement) and it would definitely give any manufacturer a competitive advantage.
Access to our health information is the right of every patient. Here's a video where I address this issue with the FDA.
http://www.youtube.com/watch?v=oq_bq4N_BXI
Excellent presentation
by Ed_H - 2011-12-13 11:12:19
Hugo,
That was an excellent presentation and I whole-heartedly (pardon the pun) agree.
Ed
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ICD Data
by hrticknor - 2011-12-08 05:12:20
I think a system that would allow ICD users access to our data logs should be a regular option for all patients. I have just significantly increased my exercise routine and would like to see what effect that is having on my cardiac function. My CRT-D device is monitored remotely but only my EP gets the results and I suppose no news is good news. Nonetheless,I would like to know what's going on between my regular 3 month interrogations. The only downside I can see to such a system could be that physicians will be opposed to such self-monitoring out of concern that it would increase their office visits and phone contact citing the old adage of what you don't know can't hurt you.
Henry