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ICD Survey on Patient Access to Data
Hello everyone,
I am an ICD patient who has been on a long quest to liberate the data collected by my ICD. Some of you may be aware of this.
In any case, I am working with a group of researchers from Stanford, Tufts, UPenn, and Vanderbilt to research patients' attitudes about their ICD and pacemaker data. We are trying to figure out whether or not patients care about the information collected by their implanted electronic devices, or not.
We've created an online survey to capture patients' thoughts on the topic. I am tasked with getting the word out about the survey.
The survey is confidential, anonymous and should take about 10 minutes to complete.
http://bit.ly/WHbFji
Thank you all Pacemaker Club members for your valuable opinion and participation.
Hugo
@hugooc
6 Comments
Thanks a lot, Hugo!
by golden_snitch - 2013-03-06 02:03:45
I probably was a bit touchy today because: I talked to an ICD patient this morning about the possibility of me setting up a patient support group, and he kept telling me that pacemaker patients would not really need that. His argument was that we never get shocked, our pacemaker just sits there and provides a steady heartbeat. ICD patients, he said, deal with a lot of anxiety due to the possibility of being shocked or the experience of having been shocked. So, his conclusion was, ICD patients need others to talk to, pacemaker patients don't. I am thankful that I have no lifethreatening arrhythmia that would require an ICD implant, but I'd never say that a pacemaker is nothing, that it causes no problems, no anxiety.
Anyways, I now understand why you are starting with ICD patients, and I think that's a great research project. And if you should one day decide to open it up for pacemaker patients, too, I'd be happy to participate.
Good luck!
Inga
Survey
by golden_snitch - 2013-03-06 03:03:15
Hi!
Why is it for ICD patients only? You say you want to find out if patients care about the data collected by their "implanted devices", but then it's just about ICD patients. You'd probably get much more data, if you open the survey to all device patients. And you could even try to find out, for instance, if ICD patients care more or less than pacemaker patients. Pacemaker patients, I'd guess, often need a lot more "tweaking" of settings than ICD patients (at least, if the ICD patients don't need the ICD to pace, but only to shock), so they might be more interested in their data. On the other hand, ICD patients have life-threatening arrhythmias that the device needs to protect them from - maybe they care more about the data than a "normal" pacemaker patient who just needs the pacemaker to prevent the heart rate from dropping too low.
There was a study published recently about patient education in ICD patients - yes, again, only ICD patients. I really wonder why the research doesn't just target cardiac rhythm device patients in general.
Inga
names
by Tracey_E - 2013-03-06 10:03:03
Inga, I didn't translate it to they only want ICD patients, she said "patients' attitudes about their ICD and pacemaker data" Most people with an icd call them all icd's, most with pm's call everything a pm. I guess to be politically correct we should all call them "devices" but old habits are hard to break!
Hugo, if you'd please confirm you want opinions from pacer patients, I'd be happy to take your survey.
Hugo's response to the above
by hugooc - 2013-03-06 12:03:19
Thank you everyone for your interest. I appreciate it.
Inga: You are right. Here's the back story. I have an ICD and have been on a crusade to liberate the data from my device. I been speaking publicly about this for many years (conferences, media, etc). Eventually, the story resonated with a couple of cardiologists from Tufts and Vanderbilt who, in turn, decided to study the topic. Hence, the survey focus on ICDs. It, by no means, lessens the experience of pacemaker recipients. I believe we can all benefit from a having access to what our device knows about itself and about our health. This is a big fight that goes head on against what manufacturers think we should have, in terms of access. I've only taken the first few steps. See this short video:
http://www.youtube.com/watch?v=MxaSFh0N2jk
TraceyE: You're right as well. The survey actually includes CRT as an option when it asks what kind of device do you have. (Although to Inga's point, it does not cover single- and dual-chamber pacemakers.) Here's my take on this. As people living with cardiac implantable electronic devices, ALL OF YOU QUALIFY in my view. You may think in terms of "pacemaker" whenever you see the word "ICD" I believe that there is a question about shocks in there somewhere. Think about that as "therapy" or pacing.
HURTHEART: I agree with that. I often tell people I have a pacemaker (to simplify things). After all, I have been paced out of VT a couple of times before. The ICD IS a pacemaker of sorts. A pacemaker on steroids, I'd say. Good point about separating the devices. It would be the best thing to do. This is just a first step. We'll expand this as we learn more. I would suggest taking the survey and including something about pacemakers and your interest in data in the notes fields toward the end.
Again, thank you all for your interest and feedback.
Hugo
@hugooc
ICD patients
by golden_snitch - 2013-03-06 12:03:40
Tracey,
if you klick on the link to the survey, it clearly states "ICD patients" several times, and not mentions pacemakers once. And I would not expect researchers, with an ICD patient among them, to just call all device patients "ICD patients". So, I'm pretty sure this is targeted at ICD patients only.
Inga
You know you're wired when...
You need to be re-booted each morning.
Member Quotes
We are very lucky to have these devices.
Thanks Inga
by hugooc - 2013-03-06 02:03:42
It's too bad your ICD patient friend doesn't get the big picture. Maybe you can help him understand that the validity of his experience doesn't invalidate the experience of others. There's GREAT value in data from implanted electronic devices. Just ask any manufacturer who relies on remote monitoring data for the post-market surveillance of their products or any doctor who relies on device interrogation reports to manage a patient's condition. It follows that this data would be particularly important to the patient who lives with the device 24/7. It is unfathomable to me that our device data is still off-limits to the patient who owns the device and has it implanted in her body.
Hugo