SHARE YOUR EXPERIENCE

Experience

by AgentX86 - 2023-06-18 16:49:43

Clicking on a random link isn't really a good idea.  There has been a poll in this group that has been published. I'm not sure where it is but I think it was GEMITA moderated the study

I have written to Emily

by Gemita - 2023-06-18 17:05:33

AgentX86, I have written to Emily and waiting to hear back.  I am assuming that she has received permission from Admin to post her survey here?  I was certainly not approached.  I agree though about clicking on links.  

We ran a Survey on post op implant pain and it was published in the British Journal of Cardiology last Summer.  In case this is of interest to Emily, I attach the link to the published article below which should be copied and pasted into the main browser to open.

https://bjcardio.co.uk/2022/07/pain-after-pacemaker-icd-implants/

Dear Emily

by Gotrhythm - 2023-06-19 12:28:42

I will not click on your link, for the reasons others above have stated.

But it's possible you aren't a 'bot', you're a real student. Even then, I won't answer you survey.

I am not naive. I understand the hoops you have to jump through to get the degree or certification you are working toward. The purpose of your "survey" is to fulfill a course requirement. A course that you need toward your degree in whatever it is. The chances are slim to none that your survey will ever be seen by anyone except you and your professor, or influence patient care in the smallest degree.

You believe the "patient experience should contribute a larger voice?"--whatever that means. Well, we have not been silent. If you think patient experience doesn't carry enough weight, perhaps, it's because it hasn't occurred to you to start listening to our experience before you decide what to ask.

If you really want to know about "patients' experience receiving and living with a pacemaker," let me suggest you read the all the Pacemaker Club posts, and all the comments submitted over a two-or three-year period. It can be done. I've done it. So have several others here.

When you have read through the Pacemaker Club archives, certain commonalities will become readily apparent. You'll know something about what patients think is important about our experience and you might have follow up questions. If you do, come back. Submit tyour questions one at a time just as all members do.  I, and others, will answer. Then tabulate the answers with percentages in this or that category to make it look scientific. Voila. You will have your "survey."

And you might have actually learned something that will make you a better doctor, nurse, PA, pacemaker tech, and benefit the patients you come in contact with in the future.

What an excellent suggestion Gotrhythm

by Gemita - 2023-06-19 13:21:30

Thank you Gotrhythm.  I am still waiting to hear from Emily re. permissions, although I have seen the survey.  It asks the following questions:- 

How long ago did you receive your pacemaker/ICD?

In which chambers do you have your leads placed?

Whether your treatment met your expectations and whether you required additional medical procedures to optimize your pacemaker/ICD?

Whether you would value an increase in performance of your pacemaker/ICD?

Whether you have ever needed a replacement pacemaker/ICD.  If so, date of replacement, whether the leads stayed in place and if the replacement device was comparable to the first one (worse/better)?

What was the reason for your pacemaker/ICD replacement?  (Battery, malfunction and so on)

In which continent did you receive your pacemaker/ICD  (North America, Europe, Other)?

Do you have any complaints about your patient experience that you would like to share?

That's it, very brief

Just as I thought

by Gotrhythm - 2023-06-19 15:33:28

If the purpose is truly to obtain information, (in which chambers are your leads placed, What was the reason for the replacement) more accurate and inclusive data is available elsewhere. Probably on some government website.

I had to laugh at "Do you have any complaints about your pacemaker experience that you would like to share?" Seriously? Our members have already shared the complaints they wanted to, no invitation from Emily needed.

Read the d-----ed posts for a year, Emily. Then do your own work of catagorizing and tabulating them.

Just as I thought

by AgentX86 - 2023-06-19 16:11:48

Not that I'm trying to write her paper, but perhaps a spreadsheet to correlate this data to individual posters.  The posting history for each member is right there. A little spooky but it's not private.

Not my job to respond to this

by Persephone - 2023-06-19 17:18:50

It is part of my paid job to respond to public information requests but this "researcher" asking me to work for free for their research is not something I would respond to.

survey

by new to pace.... - 2023-06-19 20:19:24

i would say if Gemita has not heard back from her by the 24th. I think Gemita  should delete her request.

new to pace

New to Pace

by Gemita - 2023-06-20 04:22:43

I believe this is a genuine request for information and I have asked Admin for confirmation.  It would be nice to hear from Emily herself though of course?  In the meantime, members have taken the time to respond with some useful feedback for Emily so I hope she sees it.  If she doesn't respond, then we can decide what action needs to be taken.  In the meantime, I have removed the link to the Survey to protect vulnerable members

Thank you all

by emily.thompson - 2023-06-20 06:12:03

Dear All, 

Thank you all for the feedback and for expressing your concerns. No, I am not a bot. I'm an engineer working at a university, and I received permission from your admin (I was specifically in contact with Blake) to post here. The instructions I was given were to share the link that they reviewed as a forum post. 

Firstly, thanks to anyone who answered while the link was still up. I appreciate it! 

In regards to reading through post history, of course I have done this. However, I do not feel comfortable aggregating that data, since those people may not have consented to it being used in research. I understand this forum is for people to share and communicate among actual recipients, and do not want to assume I could use anything someone didn't explicitly give me. This is also not the best way to get data on how many people don't have any issues, as they tend not to post about that. We mainly want to get an indication of what percentage of recipients have problems versus do not have problems. 

Unfortunately, while I understand many are quite vocal in these communities, many times this information does not reach the engineering side of things. There are many barriers to information sharing in the medical world, understandably for safety reasons. Our team is unable to contact patients directly due to obvious (and good!) healthcare privacy laws. The medical side generally has better information but it can be a struggle to get any from them, which makes our job of designing the equipment more difficult than it should be. This is why we wanted to try asking some patients ourselves. 

The questions may seem basic, but it gives us insight on the frequency of problems and possible correlations that we need to be looking out for when designing new technologies. We can find similar information in others' literature, but generally if a study isn't designed the same as ours, it is not possible to make assumptions from their conclusions. They generally do not share the raw data, so we are unable to see which person answered which combinations of questions, making it impossible to see correlations between complications and potential causes. 

Thanks again and best regards,

Emily

survey

by new to pace.... - 2023-06-20 07:48:28

Emily, From your last comment.  Are you planning on only designing new types of pacemaker/ICd shapes  or where in the body they should be placed or how they should connect the heart to the them?

new to pace

Response to new to pace

by emily.thompson - 2023-06-20 09:48:39

Hi New to Pace - we have several research projects, ranging from leadless designs to surgical tools that aid cardiologists during the implantation procedure. In particular, we focus on miniaturization, as well as investigating new materials to either make the housing more flexible, to make devices smaller or to provide new methods of connecting leads to the heart. For this survey, we are mainly interested in the effectiveness of & patient satisfaction with replacement devices, and if this correlates to how the old leads are treated when a replacement is put in. Thanks, Emily

survey

by new to pace.... - 2023-06-20 10:03:55

thank you Emily for your response as your survey is geared more to those who have had their device replaced.  Their have been many on here with that concern old leads with a new device.  I thank goodness have another 6 years before i have to deal with that.

new to pace

Thanks new to pace

by emily.thompson - 2023-06-20 10:33:54

Thank you new to pace for your interest and comments! Yes, we are aware of concerns & complications from old leads. We're hoping to gain a bit of insight on the frequency of any problems or reductions in effectiveness if pacemaker leads are left in place or reused. This way we can see if we're able to design better leads that either last longer, or are less problematic if left in place, or perhaps even some that are easier to remove if needed. We're still in the problem stage of this research, so we first need to identify if & what any problems are before we can design solutions.

We're also still happy to have people on their first device fill out the survey, as this can also help us to learn the frequency of lead-related problems in new devices. 

Thanks again and I hope your current device treats you well in the next 6+ years! Best, Emily

I can confirm that Emily has permission to post her Survey link here

by Gemita - 2023-06-20 12:04:38

Hello everyone, I have now received confirmation from Admin that new Pacemaker Club member Emily.Thompson asked for permission to post here.  Admin has confirmed that Emily works for a university and is doing research that is non-commercial.  Admin gave Emily permission to attach the link to her Survey.

Of course it is for each member to decide whether they wish to complete the Survey and there is no requirement to do so.   Like New to Pace, both my husband and I are still on our first pacemaker experience, so we cannot contribute in any meaningful way with regards to a replacement device.  However we have now completed Emily’s Survey and trust that our responses and additional comments will be of some help and interest.

I wish Emily well with her research work and hope that she will be a frequent visitor to the Pacemaker Club

Emily

by Gotrhythm - 2023-06-20 14:03:25

Sorry to be so hard on you. I'm glad to know that you are doing actual research that has a real world purpose, and particularly happy to know that you have read the posts. There is a wealth of context here for anyone wishing to know more about the pacemaker experience. It's my wish that more professionals, for want of a better, more inclusive noun, would use this site to suggest avenues for research. Pacemakers, modern marvels that they are, could still be better--speaking from the point of view of a recipient.

You make a valid point that, though the forum is public and there is the implied consent to have anyone read the posts, there is not informed consent to having one's post mined for research data.

I will be answering your survey questions now that I understand the purpose of the survey. As it happens, I recently had a generator change, but no lead change.

survey

by new to pace.... - 2023-06-20 21:45:18

I too filled in the survey but was a little nervous as a former email address for a gmail account appeared on the top of the survey.  I clicked on something and it said that email address will not be seen.  I hope so.

new to pace

General query

by Macfadg - 2023-07-18 06:59:51

My subpectoral  pacemaker is just visible and I notice that it moves up and down as I raise and lower my arm. Is such movement normal or could it be harmful?