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Access to ICD data is every patient's right

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hugooc Diagnosed with HCM October 2006. Find out more about hugooc
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  • armstrong
    replied
    Thank you for the good work, Hugo!

    It's astounding that patients can't read their ICD data in the Internet of Things age, but I suppose there are HIPPA and security issues complicating things. There must be a way to intercept the remote monitoring transmissions (e.g., Boston Scientific devices come with the Latitude Communicator device, which sends ICD data to the hospital over phone or Ethernet). It shouldn't even be so technically challenging to sniff these packets while they're being sent -- perhaps even doable without Boston Scientific's technical support.
    Last edited by armstrong; 06-01-2019, 03:31 PM. Reason: Add details about Latitutde Communicator

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  • Susank
    replied
    Re: Access to ICD data is every patient's right

    Hugo,
    Thanks for an excellent presentation. I am not an athlete, but I love to run and ride my bike. I always wear a heart rate monitor because my heart rate spikes without what I consider a lot of exertion, and I don't want to set off my device! I also track my pace, and not only do I not improve despite very regular exercise, some days, I am markedly slower. Other than a little shortness of breath, I have no symptoms, meds or restrictions. So I can't understand the variability in my pace, and sometimes I worry about it.

    It would be so great to have more DATA, because I feel sure I would be able to pick up on patterns. I might not be happy about what I find out (maybe I am just gettin' old), but knowledge is power.

    I hope you keep fighting the fight - it would benefit us all. If there are things we can do to help, I hope you will post about it.

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  • BigBlue
    replied
    Re: Access to ICD data is every patient's right

    Excellent presentation! I am a former endurance athlete with an ICD with no meds or restrictions. I stopped competing in 2008 when Mayo said I had HCM and then tooled around for 3 years contemplating the ICD. I got it last year and have been back on my bikes, running, and playing basketball as if nothing ever happened. I track so much of my data- I have always been connected to me the athlete. I was bummed when Mayo and Boston Scientific would not give me full access to the data that is recorded by the device next to my bed that I PAID for as well as the outdated phone line that I otherwise do not need. When I go to Mayo quarterly, they will give me print outs of whatever I want, but I want it when I want it. There is a login to the Boston Scientific site, but it gives access to ALL accounts. It is so easy to setup a login to the individual accounts- so JUST DO IT!

    @bigbluetodd3

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  • Sam Prater
    replied
    Re: Access to ICD data is every patient's right

    Hugo! Thanks so much for sharing this info. I just had my ICD implanted 2 days ago. This video was very inspiring and I'd like to know how I can help? What questions should I be asking of my EP to make sure I have access to my data?

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  • Philipk02
    replied
    Re: Access to ICD data is every patient's right

    And he is a talented public speaker.


    Originally posted by Linda View Post
    Hugo - very well done - Thanks for the great work you do in speaking for the HCM community and spreading the word about HCM. As several have noted in their comments, you bring forth great points that most of us haven't thought about at length.

    Linda

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  • Linda
    replied
    Re: Access to ICD data is every patient's right

    Hugo - very well done - Thanks for the great work you do in speaking for the HCM community and spreading the word about HCM. As several have noted in their comments, you bring forth great points that most of us haven't thought about at length.

    Linda

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  • pattib
    replied
    Re: Access to ICD data is every patient's right

    Great video! Thanks for posting it.

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  • mbcube
    replied
    Re: Access to ICD data is every patient's right

    Hugo - We both DX'd about the same time and since then you've done tons of research and empowered yourself (and many others) to be active and engaged in all issues of ICD therapy. Thank you for your tireless help.

    Leave a comment:


  • MufsMom
    replied
    Re: Access to ICD data is every patient's right

    This is very thought provoking, Hugo. Thank you!

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  • lromin
    replied
    Re: Access to ICD data is every patient's right

    Very interesting. Thank you for raising my awareness Hugo.

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  • Reenie
    replied
    Re: Access to ICD data is every patient's right

    Nice video Hugo. Honestly, I haven't ever thought about the data collected by the ICD's. You've given me a lot to think about.

    Leave a comment:


  • hugooc
    started a topic Access to ICD data is every patient's right

    Access to ICD data is every patient's right

    I'm an HCM patient and ICD recipient who's been on a quest for access to the data collected by my the manufacturer of my device via remote monitoring. I recently spoke at a TEDx event in Boston and would like to share the experience with the HCMA community.

    The HCMA has been instrumental in putting me on the correct treatment path. I am grateful to Lisa and to so many others who were greatly supportive when I needed it most. Thank you.

    Hope you enjoy the video.



    Hugo

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