I was three squats into my set when I felt a pain I’d never felt before: sharp, throbbing, and dead center on my knee. I was an active 25-year-old—pickup basketball, Tough Mudders, and the occasional backpacking trip—so I figured I’d tweaked something. But though the pain dulled over the next few months, it never completely went away.
My dad’s insurance only worked in Michigan, and I didn’t have plans to fly home anytime soon, so I waited until I was 26 to finally get an MRI. I didn’t know what to expect, but I braced for bad news. The doctor came back into the room with a printout and a glum look on his face. “It’s extremely rare for someone your age, but you have Osteonecrosis,” he said. “Basically, there’s a place in your knee where no blood flowed for a time, and that part of your bone died. Because it’s right in the center of your knee, there aren’t many great options.”
As an engineer, I’ve always been a problem-solver, and it seemed impossible that there was nothing to do. I scoured medical sites, asked friends and friends of friends and their friends too. I had to believe there was some surgery or miracle drug my doctor could prescribe. But, so far as I could tell, he was right—I can walk, even hike, but basketball, Tough Mudders, and squats have become impossibly painful.
I’ve had friends, coworkers, family members, and acquaintances that have battled cancer, diabetes, and strokes. As I crowd-sourced an answer to my own injury, I heard story after story of people hoping for that miracle cure they’d heard was right around the corner. So what was taking so long?
As I dug into my research, I was shocked to learn it takes years of preclinical work and then around a decade of clinical trials for a treatment to make it to market. I’m not a scientist—I certainly will not be the one to cure Osteonecrosis. But I wanted to build something that could expedite the time between lab-work and market. And as I continued to research, I found an inefficiency in the system I could actually affect.
Nearly 80% of clinical trials get delayed because of lack enrollment. If I could build a service to shrink that number, lifesaving treatments could reach the public in closer to five years. And so I built HDP Health to more efficiently match patients with clinical trials.
But something else struck me as I was researching my knee. As a non-medical professional, I’d never seen a medical record before requesting my own. I searched online and found that there are hardly any complete records openly available.
As I looked through my own, I was struck by the amount of unstructured data that was hard to parse—there is a wealth of information that our tech could extract and better structure. When I wanted to start working on this problem I had no idea what kind of data I would be looking at and there aren’t any good open sources online to take a look at what EMR and Patient data looks like. Given the nature of the company I’m building (and my tendency toward radical transparency), I thought it only right to share my own medical record here for anyone that is curious what a medical record extracted from an EMR looks like so if they want to build something one day that leverages medical data they can start here to see what that data may look like.
A rare knee disorder threw me headfirst into the medical system, which forced me to confront a whole mess of inconveniences and inefficiencies. I know I’m far from the only person who feels this way and definitely not the only person who wants to contribute to improving it.
At HDP Health we want to save lives by helping groundbreaking treatments come to market faster. We’re focused on patients and really making a difference—one small way of doing that is open sourcing this medical record. If you are a patient who also wants to open-source your medical records, or you just want to get involved with HDP Health in any way, email me at firstname.lastname@example.org.