Patient rights to personal pacemaker data
- by Herbie
- 2018-03-20 08:22:16
- General Posting
- 1241 views
- 5 comments
I would be interested to know what information forum members receive from medics about the data recorded by their pacemaker for their hearts?
I ask because I've had two recent pacemaker appointments, one for my 6 week post-implant review, and one before and after an MRI head scan, in different hospitals. The 6 week review told me little more than 'everything's fine', but the cardio nurse at the MRI scan was really helpful, showing me on her screen the dates of pacemaker interventions so far, and talking me through temporary adjustments she made to my bpm, and ventricular impulses she briefly sent as tests. The contrast between the two hospital visits left me wondering if there was a 'standard' or template of data which we as patients should receive from staff accessing our pacemakers? I'm in the UK, if that matters. If there was such a template, could it be posted on this excellent website as a stand-alone document?
5 Comments
medical records
by The real Patch - 2018-03-20 13:23:08
I cannot speak to the UK, but stateside we have the legal right to all of our medical records. That doesn't mean they have to jump up and give them to you the minute you request, but within a reasonable amount of time. They can by the way charge you for those records and many medical facilities and doctors do charge by the page.
Interrogation information falls into the medical records category. Many doctors and/or technicians will provide a copy when they download the data during an office visit. Much has to do with the relationship you have with the people who perform the task, so if you irritate a technician you might not expect them to be forthcoming with your records.
Additionally, recently all of my doctors have created on-line portals where I can access all of my records at will, and even request corrections when I see errors.
Useful to ask
by LondonAndy - 2018-03-20 13:25:47
Although I have asked questions at my annual interrogations, I have never actually asked for results, but as a fellow Brit I shall do so at my next annual checkup, though that is not until October.
Do you REALLY want it ???
by IAN MC - 2018-03-20 13:57:39
I am in the UK and yes you are legally entitled to see , and have copies of, any data relating to YOUR body , but you must honestly ask yourself if you would really understand it.
My pacemaker technicians have always happily given me printouts whenever I have asked for them but in a cash-strapped NHS I can understand any reluctance on their part. I have just looked at my last printout and I was given 28 perforated sheets of data , each sheet 5 inches x 6 inches. I have just unrolled the sheets over my living room floor and it is 14 feet in length ! Hmmm, I think I prefer it to the carpet !
As Patch said , the readiness to offer printouts really does depend on the relationship that you have with the Drs and technicians and on their perception of your level of understanding.
Do you really want to be the cause of chopping down so many trees ??
Interestingly my local GP practice have just made all patients' medical records available online so if I want to see the results of a blood-test done 3 years ago it is all freely available as are copies of any letters sent between my GP and hospitals. Perhaps eventually pacemaker interrogation data will also be available for us online.
I was surprised to see that my practice receptionists are now charging for paper printouts of data such as blood-test results but the online availability is obviously free.
Did I understand the 14 feet of data ? No I didn't. ! Will I ask for a copy next time ? Probably not , but I will ask for summary sheets of the bits that I do understand.
Ian
printouts
by dwelch - 2018-03-29 03:42:31
I wouldnt say the techs have happily given me printouts the current one at my docs office I eventually get but first time after she took over for the prior person had me sign some form before I could have it, etc. Still is hesitant but I get it now. Have been asking for it for a long time.
I am in the US, dont know if I agree where the law lies in this. for example I am on pacer number 5, I got my first two back no problem, dont think I even had to ask. the fourth I had to do some paperwork, which fortutnately the person there told me what I had to do. this last time around, no dice, only two reasons why you can get one, legal issues based on a suit of some sort, and only the lawyer can request it and gain possesion. or religious issues and only your funeral director can get it...but it was my insurance that paid for it, I gave up the fight, now this is a data question not a physical device question.
with how lawsuit happy we are in the us, I would not be surprised that we eithet cant now or soon gain access to info or in the future wont be able to because their laywers are afraid we might sue them for something we see there. same reason why I couldnt get my device back most likely. lawsuit avoidance, not why I wanted it, I carried the damn thing around for many years, it is part of me and I had up to that point had a over 20 year collection going.
First off there are different pacer vendors, although the big ones may be down to being just two companies through acquisitions. They definitely have two different machines they use, ( a guidant can read boston scientific for example and st jude but not medtronic if I understand correctly). And different software versions and different reports. And different levels of reports (think number of pages with or without the EKG traces, etc). So what you get when you ask for a summary can and does vary. Having just changed brands again not sure what term is the right one for that machine/software to get one that shows the current settings which I am more interested in than the graph/history if bpm highs and lows over the 6 months.
I recommend asking for a printout every time, some level of summary/report. If they refuse or continue to refuse and based on this website other folks in your country/region, etc are able to get that. switch docs if possible.
I think with time we are definitely going to have a battle between their fear of us using that data against them and our fear of them doing stuff to us they didnt tell us about. My personal take is they should be asking me if they can have access to my data, its my body, my device, my data, and only my data. I would love it if it were such that they had to fill out and sign a form before I allowed them to collect that data. At the same time, our devices are not locked down, the right person with the right eqipment already has the ability to collect information from the devices as well as make changes. the industry has no real solution and legal fear of wrongful death on the hospital side for the moment out weights the risk. if/when they fix this hole then they will have to ask you for your password or to type it in before they can start a test, until that day happens your data is wide open from a few inches using the mouse/ring on a cord thing, and from several feet using the wireless frequency used by the bedside monitors.
back on topic, I dont see why they need to use paper in this day and age, and I do fully understand the technial/electrical aspects of the device, so my doc has no problem with me having this information.
one of my devices they had my name spelled wrong in the device for most of its life, eventually found the right tech that knew how to change it...
the standard forms we sign when going to the doc these days have clauses that say basically anything (organs, tissue, etc) removed from us becomes the propery of that plan/hospital, does that apply to bits in a pacer?
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Ask for printout
by MartyP - 2018-03-20 10:08:21
When I see my EP, as soon as she's done, I ask for a full print out from the PM. I keep them and once in a while compare them to previous printouts. There are about 5 to seven small pages long and print out from her machine.