Atrial Fib and My Data

I know the first is mine, but is the second?

A few months ago I wrote about my experience having a 4-hour period of Atrial Fibrillation (AFib) and the role my Apple Watch had in getting me to help. At first, the doctors wanted to keep me in the hospital for a few days.

“Why?” I asked, “I’m fine now.”

“But I’ve got my watch to tell me,” I replied.

“Oh, no,” they said. “Your watch won’t tell you if you suddenly go into AFib with rapid ventricular response, and if you have that pulse of 140 again for a few days, you could go into heart failure.”

“Ok,” I said, “tell you what. I’ll change the settings here to tell me if I have a pulse of 110 while I’m not moving fast for 10 minutes. It will alert me and I won’t have time to go into heart failure. If I have the alert, I’ll take the meds to slow my heart and come right back. Deal?”

They agreed to the deal, and I agreed to come back in a few days to get the Zio patch. They explained that my watch doesn’t register Atrial Flutter, which is just as bad for a stunned atrium as AFib would be. I also agreed to a month of anti-coagulation treatment. It turns out that the main risk of AFib is that when you reconvert, and your atria start pumping again, they’ll throw off clots that formed during the fibrillation when blood was pooling in them. So I went home with an appointment in a few days to go get a Zio patch.

But when I went to the appointment, there was no patch. It was just the cardiologist who wanted to follow up. We then had to set a new appointment for the zio patch a week later. I thought the way these guys were talking, this patch was important for monitoring. After all, they wanted to keep me in the hospital an extra two days to get it.

By this point I wanted the patch. Another wearable that would tell me about myself? I was stoked. So we made another appointment in a week to get the the Zio, but then that was delayed by something at the hospital. So, a few days after that, over two weeks after the A Fib, I got the important Zio patch that would alert me if I had flutter or fib or any other freaky thing.

It’s a really cool device, but not as cool as I thought. It has an app where you can log your symptoms, but it doesn’t give any feedback. It doesn’t alert me for anything. Not only doesn’t it tell me anything in real time, I can’t see the data at all. I can give it data, but I can’t get any. But then again, I wasn’t paying for it, was I? The doctor prescribed it because he wanted it. The insurance company paid for it (minus the deductible), and the hospital put it on (I could have put it on). I had been looking forward to having another wearable device, but I didn’t have one. Other people did, and it was on my body.

I wore it for two weeks as directed and then put it back in its box to send it back to the company. They read it and tell someone - the doctor, the insurance company, somebody — about my data. I don’t get to know. It’s been three weeks since I sent it back, and I still don’t know. You know why the Zio patch business plan required insurance payment for success? Because I wouldn’t pay for something I don’t get the benefit from.

I bought my watch because I thought it gave me value, and it did. I would have bought the patch as it was described to me, but not as it turned out. What kind of immediate life saving benefit is something that doesn’t give anyone any data for more than two weeks and then doesn’t even tell the person involved? It’s my body, my heart, that generated the data. It’s my data. Yet it’s on a computer somewhere that I have no access to, and other people have my data that I don’t even know. Why can’t I have my own data, and why can’t I have it in real time?

Well, I asked around, and I think I have the answer. You see, the patch is FDA approved, and the FDA has rules about what consumers can and can’t see. These rules are for my own protection, I’ve been told. I can’t be trusted with my data because I might do the wrong thing with it. Data about my body might hurt me. It might cause me to make a decision about my treatment that my doctor wouldn’t suggest. Maybe it would cause me to go to a witch doctor and take a voodoo remedy that would kill me. Maybe I’d talk to my neighbor who would tell me to stick my finger in a light socket. Maybe it would cause me to grab the wrong end of the chain saw.

These centralized authorities require gold standard evidence for approving something. There are two problems with that. First, the method of getting that evidence is usually large, blinded, randomized placebo-controlled trials that tell us the difference between two large groups. As a physician, I have never treated a large group. Even when I did group psychotherapy, it was a group of individuals. We treat patients, not populations, but we have few studies and little data on the deep interactions of things in an individual patient. We have loads of evidence about populations. These are not the same thing, though the centralized powers think they are.

The second problem is that the evidence is often wrong. When I started medical school they told us people with calcium kidney stones should be on a low calcium diet. Four years later they told us the same people should be on calcium supplements because it turned out it was low calcium that caused calcium kidney stones. The evidence for how may breaths and how many compressions it took to do CPR changed so many times in my career, I stopped going to classes for it. And don’t get me started on the food pyramid, which has guided us into rates of obesity and Type II Diabetes that were never imagined before we had the damned thing.

I’ll be frank. I think you own your own body. That includes the data that comes from your body. You can take your own temperature or pulse. You can count your respirations yourself. Why can’t you have a safe telemetry device on your chest that reports to your phone in real time? Why can’t you see your EKG on your phone any time you want? Why can’t you have an app that measures accurate heart rate variability or the distance between your QRS complex and your T wave? Why can’t it measure these things over time and tell you when it’s changed? Clearly - for your own protection.

Why are you so dangerous with your own data? There’s only one reason that stands up to critical thought. It’s because the knowledge of what to do with that data has been sequestered, and you don’t have it. I want to do something about that. I want to educate everyone about their bodies so that they can be involved in decisions about themselves. I wish I could make a Zio like thing that actually had a real time app, but that’s beyond me.

What I envision is an AI in your pocket that collects YOUR data and keeps it private for you. After all, you don’t want your data lying around for anyone to pick up. The AI not only knows your data and how you respond but also has knowledge of the outside world, so it can lead you in the right direction if something changes. I wonder how many doctors and insurance company executives it would put out of business. I wonder if that’s why you can’t have your own data.

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