Data from pacemaker

Directly - no, but...

by crustyg - 2023-09-02 05:17:47

..most modern countries have passed legislation that allows patients to compel their care providers to provide health record data including imaging and technical data from PMs etc.

Charm is quicker than a formal Subject Access Request, but some providers are still stuck in the 1950s in their attitudes to patients (==you'll have what I choose to give you and be damn grateful for it).  I take a USB stick (==thumb drive) to every in-person session and after the first time when there was some resistance, they just copy the session data onto it and hand it back.  Apparently I'm lucky.  My next scheduled annual check is remote, but they have agreed to email the data over to me afterwards.

To be fair, just supplying every patient with their PM data reports would generate a lot of questions, worry and achieve very little overall.  It seems that awareness of this forum in the EP community isn't very high, and I suspect many file it under 'Dr Google' with all of the well known issues that creates.  I like to think this forum is considerably better than that, but we all know what Dirty Harry said about opinions!

Crusty

by IAN MC - 2023-09-02 05:59:52

My local hospital has a team of " techs "  ( cardiac physiologists ) and I find that one of them is far more amenable to giving me information than any of the others. Now I always ask to see him ...so far I have always been succcessful !

I had to Google Dirty Harry's comment on opinions. It is absolutely brilliant !

 ( ......but that is only my opinion  )

Ian

Forum Advice

by Penguin - 2023-09-02 06:31:22

I found out about obtaining copies of interrogation reports from this forum (God bless some of the older members) and simply asked for mine at the end of an appointment. There was no push back and a copy was provided at the point of request. 

On other occasions I had some push back and I deferred to the Data Protection Manager who said that I should not have been denied my data under GDPR legislation and that the department needed some training in this respect. Copies were provided and apologies made. The Patient Records Manager agreed that you should not be made to jump through the hoops of a Subject Access Request and that there is no need for this.  

I don't agree that information causes concern and is therefore an unnecessary worry for patients. As long as someone can find the time to explain it, surely patients have the right to know what is going on.  Medicine cannot continue to decide for themselves what is and is not in the interests of a patient.

It is a shame that more clinics haven't developed patient information sessions led by experienced patients and / or attended by an EP / Cardiologist once in a while who conducts Q&A sessions.  This kind of initiative creates more informed and involved patients and improves relationships.  It also hits more patients at once with information that would otherwise have to be discussed in clinic on a one to one basis.  Clearly, 'general settings' and 'general issues' would need to be the theme and clearly, current workloads in the NHS have an impact! 

The Arrhythmia Alliance in the UK run information sessions - but there is a charge : 

https://heartrhythmalliance.org/aa/uk/aa-heart-rhythm-updates-2023

Data

by piglet22 - 2023-09-02 07:45:21

If it's about you, and it's not MI5 or CIA doing the collecting, then it should be available to look at.

Just being able to access my medical record has been a revelation. Mind what you say in casual conversation.

I would suggest that the real problem lies with the people you see or talk to in the first place. If they told that your data was available on request, that would be a good start. Let us worry about understanding it.

I would also suggest that anyone who has made it so far as this forum, is interested enough in their condition to want to know more, but is a small percentage of the patient population.

What shouldn't be happening is someone deciding that it's their (the generators) data and not the patients, or worse still, they wouldn't understand it in the first place.

Only once in 18-years has the hospital offered infomation that I didn't ask for. Simple things like battery lifetime, dependency have always had to be dragged out of them.

If you went to have your vehicle MOT'd, and it failed, most people would want to know why and even if it passed, you legally have to see that all the checks have been done.

Same with things like household electrical testing, you get a report including all the test results.

Your health data is probably more important but sometimes shrouded with mystery.

I'll never forget the difficulty in getting a diagnosis in 2005 in the first place and when I did see someone who knew what they were doing, I took my blood pressure and pulse records along.

The consultant wrote to my GP and I got hold of a copy, in which he said "this man came armed with readings" which just about sums it up. Why did he think I had any cause to use arms? Maybe because I had spent months putting up with the dithering medical profession..

Old habits die hard in some professions like medicine and law. I had some eyewash from a solicitor dealing with my parents deaths banging on about the High Courts and London Gazette. When I get the feeling that the wool is being pulled, I start digging and of course the High Court is nothing more than the local Registry Office or Magistrates Office.

So this bit of less than truthfulness lost him/her the job and i did all the probate myself.

bio filled in

by new to pace.... - 2023-09-02 09:44:47

If you would fill in your bio as to the make, type and where you are located it would help me and possible the others in giving an answer to your query.

new to pace

Maybe depends on where you are...

by TLee - 2023-09-02 12:47:43

My health network (a term used by US insurance companied to say that all the doctors belong to the same club!) has a site that you can sign into as a patient and see all your test results etc. That is, if whoever gets them bothers to post them. My monitor sends a report every 3 mos, and sometimes it is posted and sometimes it's not. Another thing that I find is that sometimes seeing the report generates more questions, and maybe worries, when we try to interpret it ourselves. For instance, every time I have an ECG there is a summary line on the printout that says "Abnormal". I asked about it & was told it was nothing to worry about--it's not abnormal in a bad way!

Patient info

by AgentX86 - 2023-09-02 17:16:13

In the US all patient information kept has to be made available to the patient on request.  As noted above, it's on a "patient portal" for our perusal.  There is "encoded" information in there, though.  When the doctor said "patient came armed with records", it meant that "patient might be a pain in the a$$." 😉 There are ways to say that the patient isn't responsive to advice, is obnoxious, or sometimes the opposite. Read between the lines to pick up personality hints to other providers. Look for words that have nothing to do with medical information.  These are hints from one provider to another.

The report that said the EKG was "abnormal" probably indicated that one shouldn't read too much into the EKG at first blush. Dig a little deeper. Don't waste time on first impressions. We've already been there.

The big thing about providing the patient all records is, well, it's his body and very importantly, our system is based on "informed consent".  There is no way to give consent without being informed. "You got it, do what you will with it.  Ball's in your court (and don't bother my lawyers😁).".

Inferred Message in Patient Records

by Penguin - 2023-09-02 19:24:20

Does undermining a patient by inferring that they are difficult really have a place in factual patient records? Unnecessary. 

Note: Title of comment edited 

Inferrences

by AgentX86 - 2023-09-02 20:31:47

No, it's not someting I'm making up. It doesn't matter if you think it should be there or not.  The universe doesn't care what insults your sensibilities.

"As your interpretation exemplifies Agent X, this is opinion dressed up as fact and not so subtle either."

"Unnecessary."

If you don't like what I write, don't read. Frankly, I'm with the universe on this one.

Penguin and AgentX86

by Gemita - 2023-09-03 06:34:12

I think you both do a great deal of excellent work here and this site would be all the poorer without you.  We can all learn to be more tolerant and accepting of another member’s views and ways of expressing themselves as long as their comments do not breach our decency rules.  

Personally, I saw no harm in what AgentX86 wrote “When the doctor said patient came armed with records", it meant that "patient might be a pain in the . . . .”   Actually I found it quite relevant to my experience, since I know when I go into my appointments armed with an over long list of questions or bundle of medical records, my doctor’s expression rapidly changes and I can immediately sense what he is thinking, much along the lines of AgentX86's remarks.  Actually my consultant's reaction helped me to change my ways during my all too brief appointments.  I now go in with a few essential questions to make sure that they get adequately answered. 

AgentX86, I have removed your offensive words to Penguin in your last comment since you are much better than that and you deserve to be respected.

AgentX86

by piglet22 - 2023-09-03 07:23:05

Presumably, your comment was directed at me.

Am I rude to you?

I simply reported what the consultant wrote to my GP.

I've never seen him before, how would he know that I'm a pain in the arse? I get on well with the GP who referred me despite the time it took to get there.

I know you are quite clever, but the rant undoes all that. I think you owe people an apology, but I won;t be holding my breath.

It's stuff like your tirade that puts people off bothering to contribute. It's certainly not something that earns you respect.

Misunderstanding AgentX

by Penguin - 2023-09-03 09:54:43

I wasn't commenting on Piglet as a patient - I don't know him. He seems very pleasant on this forum. 

I wasn't gaslighting you either AgentX. I was actually agreeing with your assumption that the comment in Piglets medical records was trying to infer something by using a phrase which was probably factual but which inferred something else.  IMO it had no place in Piglet's medical records. 

My point, which I'd like to repeat, is that it isn't helpful when a comment is added to patient notes which 'infers' an opinion rather than fact.  This little disagreement underlines why. People get the wrong idea from it!

No disrespect intended to either forum member.

PS: Piglet - I don't think you're a 'pain in the a$$' and I agree that AgentX makes some excellent contributions to this forum which I've valued. 

PPS: Not so many years ago NFN was found in a patient's notes - 'Normal for Norfolk' !!   Seemingly funny but caused offence. 

This link explains better than I can

 https://www.empr.com/home/features/language-in-patient-records-can-convey-more-than-medical-history/2/

NFN

by piglet22 - 2023-09-03 19:26:28

Highly offensive, Cambridge Footlights stuff.

I spent six enjoyable years in Norfolk.

The arrogance, the superior tone.

I don't do woke, but if I saw that in my notes, I would spit venom.

Penguin / Piglet

by IAN MC - 2023-09-04 05:54:10

I really believe that doctors cannot win !   I don't think I would be too happy to be described as being " Normal for Norfolk " , even if I was from there, although the humour wouldn't escape me.

On the other hand , I am always suspicious about the gushingly complimentary descriptive openings in some letters from hospital doctors to my GP .  "Thank you for referring  this charming gentleman " is common but I had one last week which went too  far  :-

'' I saw  this particularly delightful man in my clinic this morning and it would be my absolute pleasure to see him again for any follow -up appointments  ".    

It made me feel like a customer in a  dating agency and left me feeling admired but suspicious!!

I did wonder if it was some sort of secret code and if the true meaning was something else.  Perhaps ' Normal for Norfolk " would have been preferable !

Ian

Humour

by Penguin - 2023-09-04 15:48:59

The humour isn't lost on me either Ian, (google inappropriate medical abbreviations and you will find a whole host of them). 

However, I can guarantee that the effect on care wouldn't make either of us smile! 

Thanks Penguin

by IAN MC - 2023-09-05 12:48:24

I enjoyed googling inappropriate medical abbreviations.....one of my favourites is :-

T.M.B.    Too many birthdays

I wouldn't be at all surprised if my GP uses that one to describe me.

On the other hand , it's a pity that patients can't use inappropriate abreviations to summarise medical consultations e.g.

T. L. A. M . I. O.T. C. S       ( Try looking at me instead of the computer screen ! )

Ian

P.B.D

by Penguin - 2023-09-06 08:19:52

Perhaps our own dictionary is merited Ian? 

I'd add: Patient Before Data (P.B.D)

Doctors certainly cannot win!

by Gemita - 2023-09-06 09:35:29

My EP/Cardiologist always puts the patient (me) BEFORE my data and that sometimes doesn't please me either because I want him to take my data more seriously, especially when I have been having some pretty high heart rates.  My last conversation went something like this:

Me:   Could you please tell me what was seen in my pacemaker data because I know I have been having some high heart rates?

EP:  I am less interested in your pacemaker data but more interested in hearing how you have been "feeling", what symptoms you have been having?  Your symptoms alone will tell me how we should proceed.  And he is not wrong either, is he?