Pacemaker App Research

Hey everyone, 

I'm a 24-year-old product designer based in the UK. I've had a pacemaker in my abdomen for 11 years. My first battery change is coming next month, I've been thinking about the new leaps forward in technology (regarding mobile phones, smart devices, and laptops, etc) but there have been little if any advancements in pacemakers.

I have decided to start a side project integrating pacemaker features into a mobile app so people like us can have our information easily to hand instead of in a doctor’s computer somewhere in our hospital.

To put it simply:  If I can control the lighting, heating, TV, from my phone - why can't I have an app that tells me my heart rate or battery life on my pacemaker?

I am currently researching what features we would like and include. If you are also interested in this idea and have a spare 5 minutes, please fill out this survey so I can find out what your thoughts are on the matter. I'm unable to paste a direct link so please copy and past this into your web browser: https://forms.gle/vturQ3RXMrRPSCKe8

Feel free to get in touch with me on here if you have any other thoughts or just want to chat about pacemakers or anything else!

Best,

Hugo :) 

 


18 Comments

Research

by Dixie Chick 65 - 2021-06-03 08:54:35

Hello, Hugo...What a fantastic idea ! I am copying the URL and will fill out the questionnaire. I agree with you about the huge leaps we have made in technology. Even though most of us aren’t medical professionals, I think we should have much more of our data available to us. 

Thank you !

Medtronic App

by IAN MC - 2021-06-03 10:34:56

Hi Hugo

Although I have no personal experience of it, I am sure you are aware that Medtronic have recently launched their pacemaker App This is from their website :-

"The MyCareLink Heart™ mobile app allows you to use a smartphone or tablet instead of a bedside monitor. Whether at home or on the go, you’ll stay connected to your clinic using cellular data or Wi-Fi. The app also gives you access to information about your heart device, including implant date, heart device type, model, and serial number, and it will send you notifications on transmission and connectivity status."

I'm sure this is the way ahead and I wish you  well with your project.

Ian

Medtronic App

by hugo1 - 2021-06-03 11:27:10

Hey Ian, yes am aware of the new app but it isn't supported on my phone! However, from what I've seen it looks clumsy and doesn't give much information. If you have time would be great to get your take on the MyCareLink Heart app through the survey, would like to get your thoughts on using it.

I now have the App !

by IAN MC - 2021-06-03 11:53:24

Hugo   Like you, my 10 -yr old Medtronic PM is near to replacement so I don't have any form of remote monitoring. This will limit the usefulness of the App I guess but I have downloaded it.

If it turns out to be the meaning of life I will let you know.

Cheers

Ian

Pacemaker app

by PaulSoth - 2021-06-03 12:35:57

Hello Hugo - What a cool idea!  I have a St Jude PM and would love to get HR data directly from my PM, if that's possible, instead of from a HRM (chest strap or optical worn on my arm).  I've been getting wonky HR data from the external HRMs and I'd like to get reliable HR data if at all possible.

I copied the URL and will complete the survey.

Thanks for taking on the task of developing an app.

Cheers - Paul

Great idea!

by Pharnowa - 2021-06-03 13:16:15

i just completed the survey.

Challenging

by Persephone - 2021-06-03 13:25:48

In my limited experience in attempting to aquire uniform data reporting from multiple manufacturers of (non-medical) devices, this will be a challenging endeavor that would require cooperation by the manufacturers, standard-setting, and periodic updating of the standards.  I'm guessing that this would not be an easy task.

Good idea, but...

by AgentX86 - 2021-06-03 16:43:01

I hate to throw cold water on your idea.  While pacemakers, today, have Bluetooth connections the links are highly secured/encrypted.  It's impossible to fathom a world where you'll be successful in either breaking the encryption or getting the PM manufacturer to fork over the details.  This stuff is guarded like your life depends on it (it does).

More cold water

by crustyg - 2021-06-03 18:26:01

I'm with Agent on this one.  Your project will never fly, because the vendors' primary market doesn't want it.

I'm sorry to have to spell this out: you are NOT the most important person for the PM vendors, and most patients have little-to-no influence over the vendor or model of device implanted in us.  The folk who actually make the decisions are the EP-docs (and often, the institutions where they have admitting rights to use the cardiac suite for the implantation, and which often have a solus agreement to use only one vendor's kit, for which the vendor then provides free programming devices, training courses for the EP-techs etc.).

Why don't the EP docs want this?  It's because they fear that they will be indundated with questions, concerns, worries about rapidly increasing PAC/PVC counts, NSVT episodes etc.  A moment's thought and you will see that a *lot* of what we see posted here would suddenly become urgent calls to the EP-doc's team with hard evidence to back it up.  Nightmare!

The technology to achieve what you want has been around for a long time.  The political will (that's not Party Political) has not, and I predict never will be.

In any case, you can *already* determine the battery life of your PM - you just need a strong magnet and to have read the manual - and you have to count your pulse which also covers your other wish.  Apply the magnet over your PM and it will switch to a fixed pacing mode, where the pacing rate is related to remaining battery life.  Designed for folk in the boonies where they won't have *any* PM interrogation units, let alone the one that works with your vendor's kit.

Survey completed.

by Slowdive - 2021-06-03 19:23:07

Survey completed.

If you can dream it, you can achieve it.

by Tulp - 2021-06-03 19:26:41


I suppose you have read the comments from agent and Crusty : I hope that wont stop you, and I hope you will find your way thru !! I just filled in the survey.

I just love the saying “If you can dream it, you can achieve it.” 

If you can dream it, you can achieve it.

by AgentX86 - 2021-06-03 20:45:15

Can you fly?  Many dream about it but few have achieved it. 

This one just isn't going to fly.

App and survey

by Dixie Chick 65 - 2021-06-03 23:44:39

I'm with Tulp on this. I'd also have to say that " Nothing ventured, nothing gained." 
i feel quite sure that what agentx86 and crusty have said is true...That being said, just because it's reality right now, doesn't mean it can't be changed. We all know these huge companies are not in business simply for altruistic reasons. They are in this to make $$$$$. We cannot even imagine the data that is gathered from our devices. I'm pretty sure it goes to MORE than R and D. I know, I know...They " say" that everything is encrypted, etc and our private medical information would never be shared. I'm not convinced that's the case. 
 

Note to Tulp - Great news for you today !

.

Happy to fill in the questionnaire

by quikjraw - 2021-06-04 04:16:21

Hi Hugo,

I am happy to fill in your questionnaire. 

I do have one consideration for you though in your venture. You will need to consider what extra burden having potentially unlimited access to the pacemaker device would have on the battery life.

I appreciate that bluetooth is low energy and and the battery in pacemakers is likely to be extremely high quality but if a user has unllimited access to connecting to the pacemaker every day it will shorten the life of the pacemaker.

As an individual I may accept say 6 months less life of a pacemaker (over say 10 years) to get access to data but for the whole NHS (or other country's healthcare system). If everyone's pacemaker was to have a slightly shorter life due to excessive bluetooth use then it could cost that country a lot of money in extra pacemaker replacements over the years. Does that that makes sense?

So you could put in some smart logic that limits the amount of times you can access the data over a set period.

Sorry if you have already thought of this!

Good luck

John

I will have a look at your questionnaire - now completed

by Gemita - 2021-06-04 05:32:14

An interesting thread Hugo and all comments are valid.  I am also in the camp that if we need something to happen we have to be prepared to work for it.  We certainly need a better way of getting access to our pacemaker records but I too have my doubts that they will surrender their firm hold on our data easily.  Having struggled to receive a copy of my full pacemaker downloads despite requesting officially long ago, has left me feeling disappointed and uncertain about even my right of access to my records as set out in the UK's "Subject Access Request under the Data Protection Act 2018".  They gave me what I didn’t request - a summary sheet - but this did not contain all the data I wanted to view.  It will probably mean reapplying again as a new request.

I would like to think that their reluctance to allow us to view our pacemaker data at any time using an App is purely based on “patient confidentiality and keeping our records safe” since anyone could gain access to our smart phones/other devices.  Lately though  I am beginning to believe that my EP thinks that a little knowledge might be a dangerous thing and that I will trouble him with too many questions in the future if he allows me complete access to my records.  However, in fairness, our doctors do have time constraints.  Mine does his best to try to help with the important questions on how I am feeling, what I want to achieve with my pacemaker and to help me with any symptoms I develop.

I wish you luck Hugo.  It will be interesting to see "what you can achieve". Your project will certainly serve to highlight once again the problems that we all encounter in obtaining pacemaker information.  We need to keep up the pressure in this area since we are entitled to access to our medical records and there has to be a better way to achieve this as we move forward

good luck

by dwelch - 2021-06-04 10:54:35

While this sounds great, it will not happen.  Even among the software development world the folks in the medical industry are quite small and it is a very painful world to live in, more so than aerospace or automotive.  The sheer volume of paperwork, testing, etc.  Think in terms of average DAYS to WEEKS per LINE of code.  1000 lines of code, that could be a few years of work.   The long range radios have used the bluetooth frequency for a while now but only recently they support bluetooth protocols, which is a very very bad idea on their part, there will be lawsuits.  In no way shape or form will they work with a third party on opening up these protocols or letting you have access to the data.  In countries like the USA the privacy laws, etc add to all of the fun of just writing code.  I am a bit shocked they are even trying phone apps for the same reason the FAA wont let phones be on (radios on) on a plane.  Not possible to validate or insure safety.  And again medical is worse than aerospace as far as this stuff goes.  

If my next device has bluetooth, I am going to see if they can turn off that radio (pretty sure they can, but will see).

If I want to know what my rate is I just put my fingers of one hand on the wrist of the other.

Now as with aerospace and auto, the old timers that could make things operate without fail for decades are retiring and dying off, and the current breed of engineers and products are quite horrible.  And perhaps these engineering choices to use bluetooth protocols and phone apps are part of this same problem with pacemakers.  It puts all of us at risk

As far of your statment that there is little or any advane in pacemakers that is completely false, you can see from pictures on this site just the physical improvements.  I have had pacers for 34 years now, I have leads older than you (will todays leads last that long?  probably not).  The technology from my first device to the current has improved significantly, keeping pace with any other technology.  as an engineer it blows me away with each new device and understanding how their world works as far as how hard it is to develop medical products.  They have dramatically improved in every way.  Including adding these long range radios for these take home boxes.  (I really should have that turned off to save battery, imagine how many months more battery life you could get per device!)

Now sadly the existence of these take home boxes with some (most, not me) leaving the box on every day, means the quality of the product can get dramaticaly worse.  If the device only has to kinda work for 24 hours or less rather than 12 months or more.  Plus the new breed of engineers brought up on crappy technology like the modern laptops and phones with their overall low mean time between failures from a system perspective.  The expectation in medical is possibly going to follow aerospace where we are close to the point that all we can launch is space trash. 

Perhaps we are beyond the golden age of pacemakers.  Lawyers and governments are in no way going back to the old days so the barrier to entry to write new code, will get worse while the technology gets worse, making code for these devices more dangerous.

Desires to create products like this is how we move forward, but understand that the software itself is pretty much irrelevant, that is the trivial part, not really even a talking point.  Access to the data, requires an interface and that interface falls within the various entities including corporate secrecy/security, various government agencies around the world, lawsuit protection/prevention, etc. 

And I am sure you are not really interested in a device twice the size of the current market just so you can have the radio transmitting constantly or often.  I just replaced the original batteries in a tv remote control that is several years old now.  Take a new remote, hold the volume down button constantly, see how long the battery lasts, years?  Months?  days?  hours? Should be hours.

I have my first three pacers, due to the same legal issues you will face, I was not allowed to have my last one, and suspect I will never get to keep another again.  Getting the data during an in office interrogation is not an automatic, some folks think you cant have that data, and the lawers may make that so, and once that happens going backward to more freedom becomes near impossible.

Again, bottom line, writing a software app is trivial, almost irrelevent as far as this topic goes.  All of the work is documentation, testing, legal, and working with the pacer vendors which you can try.   20 years ago I called mine and we were able to get some real, actual, information about operation in high EM fields (there was a shake table where I work and corporate fear of folks with medical devices in the building, customers, became a topic when someone mentioned, we have an engineer with a device).  Good luck with even that question, the answers will be no you cant be a welder no you cant do this job no you should stay out of metal detectors, etc...Rather than tell the complete story.   Legal fear/insurance.

More cold water

by AgentX86 - 2021-06-04 15:42:25

I agree with dwelsch, at least with most of what she says.  I've worked in the industrial/financial (computer mainframes), military (weapons), and automotive (infotainment) sectors as a design engineer, and a little in the consumer space, though more "professional" than direct consumer.  I haven't worked in the medical industry but I know what it would be like (no thanks).  Back in the stone age, when I was designing mainframe hardware, I know the software productivity was one line of code, per programmer, per day.  I thought that to be really bad but it is really that low.  I had friends in the space (man-rated) software end of the company (Space Shuttle onboard software).  What they went through was amazing.  It was amazing software, too. Never a bug found.

As dwelsch notes the reems of paperwork for the medical industry is astronomical, as it should be.  The devices are life sustaining. 

At the other end of the spectrum are the consumer products. Who really cares if your playstation crashes. You want it cheap. You may say otherwise but it's the ugly truth.  A million lines of code (it's more), times $500/day (minimum)...

But that's not the real issue here.  Not only are there privacy issues but there are real security issues.  A hacker would have a field day.  How many bitcoin would you send to turn off the bomb in your pacemaker?

BTW, it's not the FAA that proscribes cell phone usage on airplanes, rather the FCC.  The worry was screwing up the cell system with cell hand-offs faster than the system was designed for.  The FAA limits all transmitters during takeoff and landing, mostly because it's impossible to test every device and every combination.  It's easier to say "no".  Which brings us back to EMI and pacemakers.

OMG

by ROBO Pop - 2021-06-04 19:49:10

OMG, another Hugo ! You newbies won't remember we have an old time mrmber named Hugo who was going to get everyone access to their stored data. Guy made a lot of noise for a lot of years and now silence. I'm guessing he died trying...

You're not first to try this and frankly I'll side with the manufacturers against your endeavor...my life depends on it

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

Your anxiety is normal. It takes some of us a little time to adjust to the new friend. As much as they love you, family and friends without a device just cannot understand the adjustment we go through. That is why this site is so valuable.