How to get access to your own pacemaker data, is this possible?

bio information

by new to pace.... - 2023-07-07 08:30:48

thank you for filling in your bio information. 

Since each country area uses different ways of treating the pacemaker.  Here in the US i was sent the bedside home monitor.  Once i set it up with  the pacemaker clinic  a nightly and once a quarter  reports are  remotely  transmitted.  After the quartely transmission i call them an ask for a copy of log events and the summary.. Others use other devices.. .  I Then go into the Pacemaker clinic once a year.   Where they put what looks like a hockey puck.  Over my pacemaker it reads what the pacemaker looks like and how the wires are doing.  Then downloads all the storaged information for the past year.                                                      So far no setting have been changed. 

new to pace

I have been left begging in the UK

by Gemita - 2023-07-07 09:04:44

John, I have recently successfully received many of my Pacemaker Settings which I have been trying to get hold of since last November.  I attend a main London UK Hospital.  I had to apply formally through Information Governance for access to my records.  Some UK Members have successfully got their pacemaker technicians to download their full settings onto a memory stick, but this is quite unusual today I believe.  I usually ask my technicians lots of questions when I am there too, but I generally have to apply formally most of the time to get up to date information.

I have home monitoring and so does my husband who also has a pacemaker.  This is under the NHS.  NHS Hospitals offer monitoring to patients who have a need to be monitored, for example ICD patients or patients with heart issues that require careful monitoring.  Both hubby and I have arrhythmias that have caused syncope.  My husband also has heart failure.  Not all NHS hospitals offer patients home monitoring without a strong need for monitoring, however useful it might be for the patient.   All you can do is to ask, although I think home monitoring will become more common in the future to save time and money.  I have been asked to continue to visit my pacemaker clinic regularly because of my arrhythmias and I prefer it this way and I know many other UK Members feel the same

Since you are currently in the private sector

by Gemita - 2023-07-07 10:14:27

I would suggest you consider getting a monitor for an extra charge since with a home monitor already in place, your future NHS hospital should not have a problem continuing this service under the NHS?  You could ask about this from your current provider?

Settings that are good to know include % time you are paced in right atrium and % time paced in right venticle. Your pacemaker mode?   Whether there have been any significant "events" recorded like high atrial or ventricular heart rates?  Upper/lower rate settings? Diagnosis at implant?  Where the right ventricle lead tip was positioned?  Mine is in the septal area.  Whether rate adaptive pacing is turned On?  Pacing Polarity:  Unipolar/Bipolar?  I have a Medtronic pacemaker.  Good luck

My experience

by crustyg - 2023-07-07 15:36:54

I had my Accolade fitted under company medical insurance but somehow they forgot to request a Latitude (under the bed) monitor.  Bless them, the NHS stepped in and got me the unit *and* a paid-for-life Vodafone 3G dongle to provide coverage when I can't connect to a wired network, and, presumably, the BostonSci subscription for my downloads.

My local NHS teaching hospital were a little surprised the first time that I asked them for my PM reports, but in the four years since they've never been difficult about it.  18months ago I got home, reviewed the data and spotted a serious issue that they'd missed, five days later they fixed it for me at a repeat in-person session.

Perhaps I'm lucky - I trained there - perhaps my file is marked 'Difficult Patient' and they just get rid of me ASAP, but I prefer to think that they've moved beyond Sir Lancelot Spratt (Doctor in the House, 1950s UK Medicine) and they recognise that medical practice is acutally a shared enterprise.  It really doesn't cost them anything to give me my PM data.  They know I can get it anyway under the Access to Medical Records Act 1990.  Might as well keep me onside.

A very smart trainer of mine taught me that there's never anything to be gained by making an enemy of any patient.  But I know from other information that some cardiac centres are still well behind the times...

Private Care

by Penguin - 2023-07-07 17:37:18

Edited: Too Long and off subject. 
Access to Data : All medical care providers should provide copies of any personal data held by the clinic and you should receive a copy at the point of request e.g. in the pacing clinic when it is extracted. Check with the Data Protection Officer for the clinic or hospital and iron out any objections - if there are any - in advance.

Technology: If the private hospital supplies a bedside monitor and pacing downloads every 3 months you will receive the same service that our friends in the US receive.  These downloads can probably be sent to your phone - so check the technology available. You should check how 'complete' these downloads will be as they may be more basic reports (being quarterly).  The NHS may offer this. I'm not sure. 

Access: Think about whether you will  provide the NHS clinic with access to any bedside monitoring data which you obtain privately? You don't have to do this but it would keep your NHS file up to date and it would be useful in an emergency. 

Pacemaker print outs provide a list of settings and should list any changes made to settings at your check up. You should be told about any changes made. Printouts also provide histograms, data analysis, pacing % for the ventricle / atria, alerts issued and ECGs of 'events' such as an atrial or ventricular arrhythmia.  

Trigger alerts are set up on the device by the implanting team and if any of these are triggered the pacing clinic will be informed. I assume that the clinic log in to check for any alerts on a daily / weekly basis?? You will need to establish who will be responsible for letting you know. 

I hope this makes sense. I've written it rather quickly and there may be areas that someone else can improve upon, or correct as data sharing is complex and I'm not up to date on it. I've tried to flag potential issues.