Can we implement this by hand? We should get an intuition first on what we are exactly doing. The simplicity of the mode
The timeworn credo of medicine is “first, do no harm.” It’s hardly a fast rule anymore, but the principle comes into sharp relief when discussing the danger posed by medical devices. Doctors and manufacturers often take a statistical approach when discussing the cost-benefit relationship of these devices: Real harm is minuscule, comparatively. ICDs save lives all the time, so that justifies their use. But this gets the principle completely backwards. The question is not supposed to be will this patient get sicker if you don’t intervene, but rather, will someone get sicker if you do?
But it’s hardly just the threat of hacking that worries me. It’s a feeling instead of living as a guinea pig for an opaque set of private interests, and a feeling that I can’t trust an industry that would ever put unsecure devices inside patients in the first place.
This year, my doctor mentioned that their office hadn’t received a transmission from my ICD in a while. When I got home, I reluctantly pulled the monitor out from my closet and plugged it in by my dresser. I began the process of pairing the monitor with the device in my chest, but the monitor was having trouble connecting to my Wi-Fi. I tried it a second time, and then a third: A startup sequence ended in a flashing red light. I stopped trying to pair the devices. I breathed a sigh of relief, feeling as if, even momentarily, I’d regained control over myself, and put the monitor back into the closet.
My fear of the device infected every moment of the day. In the months after implantation, I walked around in a state of gloom like I was awaiting an invitation to my own funeral. I sunk quickly and comfortably into a depression that turned me almost completely housebound, worried about every potential action that could invite the device to fire: Could a coffee send me into an arrhythmia? Would exercise trigger cardiac arrest? Was I opening myself up to invisible risks by keeping myself constantly paired to the internet? Rather than a savior on my side, the ICD was both a permanent reminder of how close I’d been to death and still remained and a constant threat that the pain I experienced in defibrillation could return at any moment. All illusion about afforded freedoms melted away like the cheap marketing it was. I felt the least free I’d ever been, a permanent inmate in the prison of my own skeleton.
When I woke up from surgery in January 2017, the world was sideways — literally. It had lasted for so long, nearly 10 hours, that I developed acute vertigo from how my body was arranged on the table; the ICD had actually knocked me off balance. For the first several months of living with the ICD, I kept the remote monitor plugged in and turned on. It sat on the dresser in the corner of my bedroom, constantly lit up green.
This year, my doctor mentioned that their office hadn’t received a transmission from my ICD in a while. When I got home, I reluctantly pulled the monitor out from my closet and plugged it in by my dresser. I began the process of pairing the monitor with the device in my chest, but the monitor was having trouble connecting to my Wi-Fi. I tried it a second time, and then a third: A startup sequence ended in a flashing red light. I stopped trying to pair the devices. I breathed a sigh of relief, feeling as if, even momentarily, I’d regained control over myself, and put the monitor back into the closet.
It’s tacitly accepted, especially in health care, that this continued development naturally means improvement; that the further we get from the early 20th-century days of unsterile surgery, from the time before anesthesia and antibiotics, the safer our medicine becomes. But instead, by entangling medicine with the Wild West–like tech industry, the medical IoT poses a new suite of therapies meant to save lives that can also be hacked and sabotaged to endanger them.
I was perversely relieved when I learned, years later, that the psychic effects I felt were not unprecedented. In 2013, a comprehensive review of 25 separate studies into the psychological effects of living with an ICD found that at least 30% of patients showed “signs and symptoms of depression and poor quality of life” after having an ICD implanted, with most of that population meeting the criteria for post-traumatic stress disorder, and many experiencing worse symptoms as time went on. For months after its implantation, I told almost no one about the device. I wasn’t sure if I actually believed that my safety depended on keeping it a secret or if I was searching desperately for some form of control.
My hesitance over engaging with it retreats and returns like this in cycles. Some doctors have argued that overpublicizing negative information about medical devices unnecessarily adds to hysteria in a way that affects patient compliance. “You have to make sure that the reaction to [a problem like hacking] doesn’t introduce more risk than the potential for a problem,” Dr. Saxon told me. Removing a problematic device, for example, reintroduces all the standard risks of surgery.
I have had my ICD for nearly four years now. In that time, it has never once shocked me. I should feel relieved that the device has not yet gone off, but instead, the longer it sits inside my body without having saved my life, the more I think about the device’s ability to end it. Much of my experience of the health care system has been one of escalating calamity: The solution to one problem invariably causes an even bigger one. Even my very first pacemaker seems linked inextricably to the fact that I later became eligible for an ICD: About 10 months into living with it, I developed an arrhythmia that my doctors later determined was somehow caused by interference from the pacemaker itself. The heart surgeries I’ve had over the years have contributed to a layer of scar tissue on my heart that predisposed me—and likely contributed to—the incident that led to the ICD. When it comes to the security of the ICD itself, it’s less an absolute question of whether the costs outweigh the benefits and more a philosophical one. Not only do I feel less safe, but I am now also acutely aware of the ways in which I might have been destined to end up at this point, tracing the steps that led me here back through the maze of treatment.
My anxiety has lessened with time, but still the question nags at me, settling into a more ambient concern. I no longer spend every second of the day worrying and waiting for another shock, mostly because I’ve learned not to think about it. What bothers me more now is the cavalier way the medical community has decided unilaterally that the threat of hacking does not matter for the average person, and that the side effects are outweighed by the lifesaving nature of the device. Their counter, when it comes to hacking, is not that harm is impossible, but rather that it’s unthinkable: Who would even want to hack a patient? And if nobody comes to mind, is the problem worth fixing?
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you’ll need to buy a virtual private server/ cloud instance (or set up a server of your own at home if you have decent bandwidth). If you’re planning on adding many other services I’d recommend a VPS but with the services in this article I don’t think I’ve used much more than 0.7 G of RAM and 10GB of storage. So far I’ve only tested my scripts on Ubuntu so make sure your serve is running Ubuntu 18 or 20. Note: Don’t use an Amazon EC2 instance or the Microsoft equivalent they tend to block the ports needed for Email servers. Also we’re trying to not rely on giant tech companies remember? ;)What’s worse is that the rapid normalization of people willing to pair their medical data, health monitoring, and disease management to the internet in some ways perpetuates itself. Connected medical devices like pacemakers, ICDs, and continuous glucose monitors for diabetes management, as well as commercial wellness products like fitness wearables, create a flywheel effect that amplifies further use on both sides. Before medical and health IoT devices took off, people generally went to the doctor when they felt unwell. Now people are also going to the doctor when they feel fine but a machine is telling them something is wrong. Diagnostic cardiac tools, for example, like the Apple Watch’s arrhythmia detection, have the potential to drive more people into the health care system and could end up helping to increase the population of cardiac device users.
There’s already some evidence that connected cardiac devices are being overprescribed, perhaps due to the positive bias the devices can engender in doctors and manufacturers. A 2011 study in JAMA found that in a population of more than 100,000 IC