Hugo Campos has major arrhythmia, goes to ER, wants his data even more now

SPM member Hugo Campos has had much coverage here and in the media (NPR, SF Chronicle, San Jose Mercury-News) for his desire to see the raw data coming out of his implanted defibrillator. The vendor, Medtronic, feels that its responsibility is to give Hugo’s doctor the data, to understand what episodes happen in Hugo’s heart, to which the device responds by shocking him if necessary.

Hugo, meanwhile, would prefer to understand what‘s happening in his heart so he can avoid episodes. (Imagine someone preferring to stay out of medical trouble, instead of being rescued.)

And when something happens, large or small, he’d like to know what, so he can understand his body and do everything in his power to live in a way that works well for him. That’s why, for instance, despite the vendor’s lack of cooperation, he created a little self-tracking form (as described in his excellent 8 minute TEDx talk) and figured out that scotch whiskey gives him atrial fibrillation.

Without the vendor’s help.

So now he doesn’t drink scotch.

Well, yesterday around noon PT, Hugo had an arrhythmia that made his heart go wonky for a full twenty seconds. It was Not Pleasant – imagine your heart (with known problems) going crazy in a way that doesn’t stop – yet his device didn’t say a thing. (Addition 5/11: as Hugo explained in a comment below, the device did in fact respond, probably saving his life, but he had no way of knowing – it gave him no indication.)

He called 911, then felt better, so he got himself driven to the ER.  He has high deductible insurance. He live tweeted it; here’s a Storify capture. He’s fine today, but note the delays and things that could have been catastrophic.

Why can’t he have his data? Why does someone else have to come visit to “interrogate” the device, i.e. get the data out of it? What if the delay had caused preventable harm?

Here’s the storify feed of the tweets: (We’ve had some trouble with the code not working, so if you can’t see tweets below, click here to see it on Storify.com)

Interestingly, on Monday the vendor’s PR account had happily tweeted: “We’ve developed systems 2 help connect patients, drs & manage chronic disease. Learn more about #MDTs CareLink systems.” The next day Hugo replied:

That’s nice. Too bad patients can’t access the data you collect from our implantable devices. #MDTs CareLink #FAIL

And the next day, he had his episode. Quite a portent, eh?

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Comments

20 Responses to “Hugo Campos has major arrhythmia, goes to ER, wants his data even more now”

  1. Brenda says:

    Glad that your fortitude has carried you through this.. not sure if your frustration button has survived though. Certainly this just shows how important that the end user, has some control.. some input. Else why bother fitting the device in the first place.
    take care and keep tweeting

    • Hugo Campos says:

      Thank you, Brenda. I was treated well at Alta Bates Summit and I feel like the doctors and nurses did listen to me. The frustrating part is being kept from the data collected by my device.

  2. Mighty Casey says:

    Best example yet of an engaged patient attempting to interact with a system that has NO CLUE how to deal with engaged patients. Delighted that Hugo’s better, he’s not the only person I know who’s dealing with defibrillator drama. Medical devices in the US don’t seem to have much in the consumer-safety/warranty category.

    • Hugo Campos says:

      Thank you Mighty Casey. It feels good to be engaged. I felt in charge most of the time. But there’s still that missing piece: data access. Data would put me in control of my condition and give me peace of mind. And to your point, it could even help with post-market surveillance of medical devices. As Dave says: Let patients help! Together we can solve this.

  3. Lygeia Ricciardi says:

    Hugo —

    So glad you are OK. Thanks for sharing an amazing story… There’s a lot to learn from it!

  4. Hugo, could you explain what ATP is, in this context?

    • Hugo Campos says:

      ATP stands for anti-tachycardia pacing: the delivery of very short and rapid pacing pulses to the heart in order to terminate ventricular tachycardia (VT). VT is a malignant and potentially deadly rhythm.

      My ICD is capable of delivering ATP while it charges its tiny capacitors to deliver a life-saving shock. It takes about 10-15 seconds for the ICD to get ready to deliver a shock to the heart. So it has time for one attempt at ATP while it prepares for a shock. ATP is usually painless, while a 750 volt shock to the heart is not. So, I am happy ATP worked for me.

      In this video, a Dutch soccer player with an ICD has an event while playing a match. This is pretty much what happened to me yesterday, with the exception of the shock.
      http://www.youtube.com/watch?v=DU_i0ZzIV5U

  5. SPM member Peggy Zuckerman adds this (she asked me to post it here) –

    Does this mean that Hugo Campos or his counterparts must always have any of their surprise problems close enough to have the “interrogator” pop into the ER at the same time he is there? And think how unhappy we are when the cable goes out, and the cable man is a few hours late in coming? What am I missing here?

    Growing up in a rural area, hours from any big population center and now likely to be stuck on some freeway while heading to the ER most convenient for an “interrogator”, I just don’t understand how this system can work at the very times it needs to work.

    • Hugo Campos says:

      Here’s how it works:

      Each brand of ICD needs its own “programmer” to be interrogated. A programmer is a portable computer capable of communicating with the implanted device. There are 4 main manufacturers of pacemakers and ICDs in the U.S. So, it would be too much for an Emergency Department to keep 4 programmers in a closet somewhere just waiting for the sporadic pacemaker patient to walk in. So, they don’t.

      The only choice is to page a rep to come by and interrogate a device whenever needed. This is a service medical device companies provide to hospitals FREE of charge.

      Also of note is the fact that ALL programmers remain the property of medical device companies even when used in clinic by trained nurses and cardiac electrophysiologists. These guys never let go of their data-collecting machines. Even the remote monitoring boxes given out for free to patients to use in their homes remain the property of medical device companies.

  6. peggy zuckerman says:

    If I understand properly, this still means that an available technician with the appropriate computer must meet the patient at the hospital when one of these problems arise. Without being overly morbid, how long can any one patient “tread water” without getting into severe problems, even more severe than that which sent him to the ER?
    Is the use of the device typically limited to certain geographic areas–how does a patient know where to go, if he is outside his home base? Even more reason for the patient to be able to monitor his data and understand any signals of potential problems.

    • Hugo Campos says:

      Interesting points, Peggy. If the implanted device is working properly, it shouldn’t be particularly risky to wait for the rep (or clinical specialist, as they are called). After all, you’re being fully monitored at the ER and the device can deliver therapy if necessary.

      However, there’s no way of knowing whether or not the device is working until it’s interrogated by the manufacturer. So if the implanted device has a fractured lead for example (a common complication), it is conceivable that the patient might receive inappropriate and unwanted shocks until the rep arrives to deactivate the device, causing someone great pain and distress.

      With regard to the second part of your question, there are about 5 pacemaker/ICD manufacturers operating in the U.S. Their market share ranges from roughly 50% to 1%. So, if you have a more ubiquitous brand of device, your wait might be shorter than if you have a device in which the rep has to cover an sales region of 100 miles.

      Again, patients should be the ones empowered with information and timely access to the implanted device. It’s unconscionable, in my view, to keep us in a powerless position in which we depend on a manufacturer’s rep to know what’s going on in our bodies.

  7. Jen says:

    Hi, I am glad your device worked well and saved your life! I’m a device rep, and while I can appreciate your desire to have your data, you are not a trained medical professional, and can not adequately interpret the data to make accurate decisions on your incredibly complex condition. I always give my patients copies of all the data I collect (when they want it), but the EP is ultimately responsible to interpret the data. While you seem quite knowledgable, most patients are not, and would have no idea what any of the data meant!
    Thank God we have such amazing, life saving technology!!

    • Jen, it appears you’re fairly new to Hugo’s story and may not know his deeper rationale. Did you watch the 8 minute TEDx talk linked near the start of this post?

      I think there’s something of a disconnect between Hugo’s actual desire (to understand his situation as much as he can) and what you seem to have inferred. Please watch the talk and try to see things from his point of view. He’s not trying to replace medical professionals – he’s trying to understand what his heart is doing, as much as he can, to supplement what his professionals are doing.

      He wants to be an engaged, activated, in-the-game empowered patient. An e-patient.

      Hugo knows, as expressed above, that the device saves him when he has an episode. His goal, as explained in the talk, is to be responsible for his well-being and do everything in his power to prevent episodes. I’m sure you’ll agree that’s a good thing for a patient to do. (Yes?)

      Please do watch his TEDx talk and see if you can see it from his point of view. He’s working toward a different goal than what the trained device professional does.

    • Also, Jen –

      > While you seem quite knowledgable,
      > most patients are not, and would have no idea
      > what any of the data meant!

      That doesn’t in any way affect what *Hugo* wants, right?

      I also encourage you to watch this TED talk by Thomas Goetz, editor of Wired: It’s time to redesign medical data. All other industries eventually realized that when data is confusing, the solution is better software, not to insult people who can’t understand it when it’s poorly displayed.:-)

    • Hugo Campos says:

      Jen,

      Thanks for your comment. Your conventional view does not surprise me. To medical device reps, the doctor is king. Patients are only the recipients of the therapy, and as such have no voice in how the therapy is applied. This is exactly the type of paternalistic attitude I wish to eradicate.

      The data originates inside MY body and is collected by a device that I OWN. Ergo, it is MY health data. It is also MINE the decision of what to do with it: how to use it, and who to share it with. Whether or not I am “a trained medical professional” who can “adequately interpret the data to make accurate decisions” is besides the point. It is my body, my life and my medical decisions. I must be the one at the center of it all.

      Hugo

  8. Jen,

    Dave has been very polite in his answer. I won’t.

    You write “I’m a device rep, and while I can appreciate your desire to have your data, you are not a trained medical professional, and can not adequately interpret the data to make accurate decisions on your incredibly complex condition.”

    What on earth allows a “device rep” to judge the ability of any other human being to adequately interpret any data? I am surrounded by great experts, large numbers of smart patients, great programmers, people who deal with big data in much better ways that any “device rep” will ever be able to fathom, unless that “device rep” is herself deeply immersed in the science of parsing and interpreting all the data bits from any big data flow.

    Jen, your paternalistic view is what has allowed medical professionals to commit medical errors uninfringed by proper checks for far too many years. You should be ashamed of yourself!

    This is a community of contemporary empowered patients and caregivers who have found many ways to live longer and better by bypassing or individually improving parts of the healthcare system you seem to worship as god given. We represent a large movement, who is sick and tired of dinosuars like yourself. People have taken charge of their care because such dinosaurs cannot improve the system. Enough said.

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