Alone, Afraid, and Stuck in a Data Desert

Matthew Order

The light was bright as it shown down on my face. I lay on a cold bed staring up being prepped for surgery, and as I wait to be knocked out, all I can think about is how incredibly painful it was to get to the point I was at. From a physical perspective, of course I was in a ton of pain, but from a mental perspective, my entire worldview of medicine was just turned upside down.

To give you some backstory, I had attended an economics camp (nerdy I know) in Washington D.C. when I was an early teen. Away from home, away from parents, and ready to meet some new friends. With the week ahead of me, I was ready to learn about game theory through the lens of team activities. After one of my first meals, I felt an incredibly sharp pain shooting through my stomach. I had no idea what was going on. Fast forward a few hours, and I had to ask the conselours to drive me to the emergency room as my pain was that intense.

I will NEVER forget the moment when I arrived in that waiting room. I was with a man I have never met before (alone), in what at the time was the worst pain I have ever felt, and the man in the ER was asking me all of these basic questions that I was sure he already had the answers for. I was struggling to answer the most basic of healthcare information about myself as pain was coursing through my body. All I could think question after question was, my doctor has a computer, you are on a computer, how on earth do you not have access to this information?

At the time, I had no idea what I was asking for. I was expecting a small private practice in Boston (looking back likely on paper mostly at the time), to be able to instantaneously send a copy of my entire medical records to a random ER in Washington D.C., in a discrete data format. It seemed simple to me, I was already in a place with technology where I had my own laptop, ICDN wireless internet card (yes I was spoiled as a kid), and access to what seemed like an endless supply of transferrable information. Surely, if some of the most basic applications I used for entertainment purposes could facilitate easy and clean data transfer of course the healthcare industry could...it is HEALTHCARE, the single most imporant facet of our lives, our lives themselves.

It is now roughly 15 years later, and while things have improved, the state of interoperability in health IT is abysmal. The fact that two different EMR systems cannot seemlessly share data is one thing, the fact that the same EMR system in many instances cannot share data with itself is complete hogwash (pardon my language). This is a plea to vendors, providers, and patients. Demand more and work together. There is no way a technology company is going to create a great clinical workflow alone, and in the same vain there is no way a doctor is going to write a sophisticated software application. We need to work together to make sure that we have the tools to bring healthcare back into pace with the technology in every other industry, but to make sure they are tools that are usable and designed with end users (patients and clinicians) in mind. Vendors need to hire more clinicians, and clinicians need to embrace this technology to guide vendors and make it their own.

P.S. For anyone who was curious, I had an emergency appendectomy. Everything went smoothly thanks to my clinical team, and the only hiccup was flying home when of course TSA decided the kid straight out of surgery was the one that needed to be searched.