I’m leaning against a laminate counter that’s seen 27 years of Clorox wipes and despair, trying very hard not to scream. The metallic taste of blood is sharp on the right side of my tongue-I bit it earlier while trying to scarf down a lukewarm turkey wrap between park inspections-and the pain is making me lose my filter. Across from me, a clerk named Brenda (or maybe Bernice, the badge is faded by at least 37 percent) is telling me that my own body is currently behind a paywall. To get the high-resolution images of my tibial plateau fracture-images that my insurance already paid $777 for, and for which I sat in a cold tube for 47 minutes-I have to pay a $57 ‘processing fee’ for a CD-ROM. A CD-ROM. It is 2027, and we are still using technology that peaked when The Matrix was in theaters.
Walled Gardens and Market Share
We’ve been told for decades that the digitization of medicine would usher in an era of seamless interoperability. We were promised a world where a doctor in Seattle could instantly consult with a specialist in Seoul while the patient was still on the table. Instead, we’ve built a series of digital walled gardens. These institutions treat patient data like gold bullion in a vault. They aren’t protecting my privacy; they are protecting their market share. If it’s hard for me to take my data to a competitor, I’m more likely to stay within their network. It’s a retention strategy disguised as a HIPAA compliance hurdle.
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‘Policy,’ she says. That’s the word they use when the logic has run out. Policy is the rust on the swing set chain that eventually snaps and sends a kid flying. It’s the invisible friction that makes the entire healthcare experience feel like you’re wading through waist-deep molasses.
My tongue throbs again. The sandwich was a mistake, but this conversation is a catastrophe. I ask Brenda why she can’t just email me a secure link. She looks at me like I’ve asked her to perform open-heart surgery with a spork.
The Friction Cost
OLD SYSTEM
NEW GOAL
The Absurdity of the Patient Portal
Think about the absurdity of the ‘Patient Portal.’ Most of them look like they were designed in 1997 and never updated. You log in, navigate through 17 nested menus, and eventually find a PDF that says ‘Results: See Image.’ But the image isn’t there. The image is on a server in a basement three counties over, and the only way to get it is to drive to the basement, argue with Brenda, and pay the ransom. We have accepted this because we are vulnerable when we are patients. When your leg is broken in 7 places, you don’t have the energy to fight the structural rot of the American medical-industrial complex. You just pay the $57 and pray the CD doesn’t have a scratch on it.
Tibial Plateau Fracture Points (7 Areas of Structural Failure)
Density
Angle
Trauma
Tissue
Surg. Prep
Healing Rate
Future
I’ve spent the last 17 years looking for structural failures in public spaces. I know what happens when a community stops maintaining its infrastructure. The wood rots, the plastic fades, and eventually, the whole structure becomes a liability rather than an asset. Our medical data infrastructure is currently in a state of advanced decay. It’s fragmented. It’s siloed. It’s intentionally difficult.
When a facility actually integrates its services, it feels like a miracle, but it should be the baseline. For instance, at a place like gastroenterologist queens, the goal is to have the diagnostic tools and the treatment specialists under one roof, sharing the same digital language. It eliminates the Brenda-at-the-counter-with-a-CD-ROM phase of the journey. But they are the exception, not the rule.
Data as Currency: Pain for Profit
There is a deeper, more cynical layer to this. Data is the new oil, and hospitals are the refineries. Every data point generated by my broken leg-the density of the bone, the specific angle of the fracture, the way my tissue responded to the trauma-is valuable. It’s used for machine learning, for training AI diagnostics, for actuarial tables. It is sold and resold in anonymized aggregates. The hospital makes money from the data I provided with my own pain, yet they charge me to see it. It’s like a landlord charging you a fee to look out the window of the apartment you already pay rent for.
From Aggregated Sales
To View Own Map
I remember a park in the Bronx I inspected about 7 years ago. It had this beautiful, elaborate climbing structure that had been closed off with orange plastic fencing. The city had lost the key to the gate, and because the manufacturer had gone out of business, they couldn’t replace the lock without replacing the whole unit. So this $107,000 piece of equipment just sat there, useless, while kids played in the dirt next to it. That is the current state of our medical records. The data exists, the technology to share it exists, but we’ve ‘lost the key’-or rather, we’ve decided that charging for the key is a better business model than letting the kids play.
The Demand: Data Liberation
Brenda finally finds the CD burner. It makes a whirring, grinding sound that reminds me of a rusted merry-go-round. I wonder how many people have stood where I’m standing, clutching a prescription or a referral, feeling that same rising heat of indignation. It’s 12:47 PM. I have three more parks to inspect before the sun goes down. My leg hurts, my tongue hurts, and my soul is tired of being a commodity.
1.7 Gigabytes
We need to stop talking about ‘patient engagement’ and start talking about ‘data liberation.’
True ownership of one’s health journey starts with the raw files. Not a summary. Not a PDF. Not a low-res thumbnail on a glitchy portal. I want the DICOM files. I want the 1.7 gigabytes of raw sensory data that constitutes the current state of my physical being. If I can download 47 gigabytes of a video game in 7 minutes, why does it take 17 days and a trip to a physical office to get my own medical images?
This isn’t a technical problem. This is a power problem.
As long as the data is held hostage, the patient is a subject rather than a partner.
Structural Instability Citation Issued
I look at Brenda. I want to tell her about the playground in the Bronx. I want to tell her that she’s guarding a gate that shouldn’t exist. But my tongue is throbbing, and I’m just so incredibly tired of the friction.
I pay the $57. The receipt prints out-it’s 11.7 inches long, filled with disclaimers and codes I don’t understand. I limp out to my truck, the CD sitting on the passenger seat like a small, silver ransom payment. I think about the 107 people still in that waiting room, each of them a data goldmine being mined for everything they’re worth, while being denied the very maps of their own bodies. It’s a broken system, and there isn’t enough orange safety tape in the world to mark all the hazards.
As I pull out of the parking lot, I realize I’ve forgotten to ask for the radiologist’s report. That’s probably another 27-minute wait and a different department. I keep driving. The wind through the window cools the sting on my tongue, but the heat in my chest doesn’t go away. We aren’t patients anymore; we are just data points waiting to be monetized, one ‘processing fee’ at a time.