I wanted a FitBit for Christmas. After all, working in digital tech, it seemed like something I should have right? After some research about the FitBit, Nike FuelBand and others, it felt like the device most suited for my entry into the quantified self world, so I put it on my Christmas list. My wife, often not knowing quite what to get the geek who has everything, happily ordered it from Amazon and placed it under the tree.
But a weird thing happened to me over Christmas break. I got sick. That may not sound weird, but for me, it’s a big deal. I never get sick. I was dizzy. I had chest pains. I had odd stomach and tummy discomfort. My left arm hurt. Being the holiday week, my primary physician was on vacation, so, given my symptoms I went to nearby redi-care clinic. The doctors there ran various tests and ruled out anything major, but couldn’t tell me what was wrong. Over the next month I saw a gastroenterologist, a cardiologist, my family doctor, the doctors at the redi-clinic (for a follow up) and even had a trip to the ER thrown in for good measure.
What struck me about all of these experiences was that with each interaction, I pretty much had to start from scratch reporting my medical history and the various symptoms I was experiencing. Each doctor would listen patiently and then order various tests, mostly overlapping what the previous doctor had already done. When something was ruled out, it was on to the next doctor. Rinse. Repeat.
Even as I tried to be as thorough as I could be in telling my story and detailing my symptoms, invariably, I would forget a detail or a question to ask. After all, it can be complex and time consuming when you are experiencing a new illness, especially when you have to go through the whole menu and history multiple times.
While all of this was going on, I finally got to play with my FitBit. It’s cool. I was instantly captivated with how many steps I took, how many miles I walked, or how well I slept. But after a week or so I started contemplating a basic question; what is this thing actually telling me? So what if I walked more than I did yesterday, am I healthier? I woke up 3 times last night, how can I fix that? Is it even bad? Is it good? I unlocked the ‘Stair Climber’ badge! Now what?
Soon, the medical test results started coming in. Blood pressure was good, cholesterol a bit high, glucose elevated. I was receiving pages and pages of data about my body. As I started collecting the results, I realized the picture was incomplete. I went back to the ER and got copies of my Chest Xray. I went to the radiologist and got copies of my ultrasounds and the CT scans. Pretty soon I was able to hand a very detailed dossier of my medical information to a doctor. As my family doctor told me when he saw my packet of data, “This is immensely helpful.” It cut down on the explanation portion of the consult dramatically.
So back to my FitBit. I realized why my experience with it was leaving me wanting. What I desired was something to tell me if I’m getting healthier or not. And if not, how to get there. Steps and stairs and sleep are great, but they are just data points in a vacuum, and don’t tell me anything about my overall health. So, if I want to quantify my health, I mean really quantify it, I realized I was going to need a lot more data.
Our current health system is mostly set up to treat illness. I’m sick, I go to the doctor. The doctor collects data and makes a diagnosis. But what if I want to track my wellness? See something before it arrives? What if I want to use data to manage my health proactively, not reactively? After all, I should know my blood pressure, heart rate, and respiration; why not liver function and blood sugar? There are some diseases that progress silently. So If I can get a scan when I have pain, why not proactively to ensure nothing deadly is around the corner? An ounce of prevention and all that.
If the idea behind the quantified self movement is to monitor activity and behaviors to improve wellness, then my idea behind quantified health is to round out the picture with more robust data sets to do the same. Steps don’t tell you how healthy you are. Your white blood cell count might.
In the era we live in, most basic diagnostic testing can be self referred and the results are both quantifiable and necessary to understand the state of wellness. Since our healthcare system is geared towards fixing what’s wrong, not optimizing what’s right, you may need to buck the system a bit to get the data you want. But, there isn’t a playbook to do this. What are the data points I should collect? What are the measures of wellness? What tools do I need? Where do I go for services? Do I need insurance? Will my doctor help? Where can I go to get tests? What do I ask for? How do I take command?
In the coming weeks I hope to unpack these issues in more detail. In doing so, you may get more information about me than you could ever want or need. Deal with it. Whether it’s ordering my own blood work, radiological tests, or using digital tools to help manage other aspects of my life, the goal of these posts will be to experiment with these concepts so you don’t have to. Hopefully we’ll all end up healthier as a result.
Oh, and for those who were wondering what my illnesses were over Christmas break, it turned out to be a viral infection (the dizziness) esophageal spasms (the chest and tummy pain) and thoracic outlet syndrome (the arm pain). I’m feeling much better now.