The Human Side of Interoperability

Interoperability is about connecting electronic systems. But when a patient is wheeled into the operating room for surgery, he sees that interoperability goes much deeper.

“I got into the operating room,” my colleague told me.

“It’s cold, and there are bright lights above, and there’s this sterility that somehow carries its own scent, and it’s a teaching hospital so there’s a lot of people in the room, and here I am: the half-naked patient. I am putting my trust in this surgeon and in this care team. I trust them to take care of me. Then two, three deep breaths, and I’m out.”

The Pain of Disconnection

“Something funny happens when you go from person to patient,” my colleague told me.

He didn’t mean “funny” in the literal sense, but in the sense of a universal human experience: of going from good health to a “condition,” whether an illness or injury. For my colleague, this happened as he went into his middle and high school years, when the need to fit in with the crowd—to not stand out in the hallways between classes at least—can feel all-important.

It began when his mother noticed him tripping over his feet. At first, this seemed to come from the shuffle of a newly minted teen. But it got worse. The muscles of his feet and calves began to shrivel. His right ankle began to roll, like an athlete’s misstep on the soccer pitch or basketball court, but at the slightest provocation. Stepping on a pebble on the sidewalk was enough to roll the ankle.

At this point, he began to feel the acute pain of disconnection.

Tests revealed a rare autoimmune disorder, which damaged the peripheral nerves in his lower legs, and would cause the muscle atrophy and awkward gait that prompted someone to scrawl the word “GIMP” in black Sharpie on his calculator, in big block letters, in class when he wasn’t looking. Worse yet, his care providers weren’t sure if the condition would improve. There was no definitive diagnosis. There was (is) no cure.

He felt disconnected from his health, cut off from the carefree act of running he once did as a little boy. He felt disconnected from his peers, by way of being “abnormal,” his leg braces hidden under his jeans. And he felt disconnected from his future, given the lack of information and the lack of certainty around his diagnosis.

A tendon transfer helped to stabilize the right foot and ankle, but the fix wouldn’t last forever. Luckily, his autoimmune disorder plateaued, but wear-and-tear would weaken the cushion of cartilage in the ankle joint, and it would eventually become arthritic. He was warned that more intervention would be needed later in life.

Three decades later, and it had come time for a comprehensive ankle reconstruction.

The Power of Connection

As my colleague was wheeled into the operating room, and as his care team put all their skill and experience and know-how into healing him, it forged a connection—a reconnection, in which my colleague went from patient to person once again.

By this time, all the technical aspects of interoperability had come into play: His surgeon had evaluated the condition of his ankle via a telehealth appointment. Imaging and patient history was sent from the portal of one health system to the portal of another health system several states away. The care teams in two separate states got on the same page, and a plan was made for post-op care. And while the surgeon made no concrete promises, he determined that he could make a go at reconstructing my colleague’s ankle.

It took over 7 hours. The surgeon cut tight tendons, rerouted others, cut and reshaped bone, and did a partial fusion of the ankle joint. Hardly a bone, joint, or tendon went untouched.

Let me put it this way: You take the vulnerability of being a patient, and you put it in the provider’s hands, and you trust that they will transform your vulnerability into vitality as much as possible under the circumstances. I say “as much as possible” because there is no such thing as the perfect body. There is no such thing as perfect health. There is no scenario that will keep someone in perfect health 100% of the time. This applies in healthcare at large, too: There is no such thing as a perfect system. There is no such thing as the perfect process. There is no such thing as a perfect technology that “cures” all obstacles and challenges we face.

But we can aim to make life at least a little better—if not a whole lot better—for patients and the providers who care for them. This is the kind of connection that matters. This is what we’re talking about when we talk about interoperability: the connection between people, between providers, and between the patient and the provider who cares for that patient. That’s the heart of it. In this light, I’ve come to see interoperability not just as a technical challenge, but a very human one.

So, when my colleague had his initial hard cast taken off a few weeks later in the first post-op exam, he was nervous and shaky. How would his leg look? How different would it be after 30 years of wear and tear? How would it feel to see the work of his surgeon for the first time?

There it was, his leg and ankle, straight and true, and he had a hard time holding back his tears.