Your Health Records Are Being Held Hostage Even Your Children’s

In 2025, we live in a world where your coffee is delivered via drone, your thermostat runs on AI, and your banking is accessible with a thumbprint. Yet somehow, when you visit a new doctor, you're still faxing over your medical records like it's 1997.

Worse, you don’t even own those records.

They’re fragmented. They’re scattered across different systems. And too often, they're being held hostage for profit.

The Real Cost of Fragmented Health Records

Let’s say your child breaks their arm while on vacation. The ER visit generates new medical records. But unless that hospital uses the same Electronic Health Record (EHR) system as your family pediatrician good luck transferring anything efficiently. In many cases, it won’t happen unless you pay for it, fill out forms, or worse, wait weeks.

And if the hospital runs on a system like E___, which dominates over 30% of U.S. hospital EHRs, you’ll run into locked-down data silos and bureaucratic red tape. E___ may be technically compliant with regulations like the 21st Century Cures Act, which mandates patient access to health data but in practice, the hoops patients must jump through show how broken the system remains.

Who Really Owns Your Medical Data?

Not you. That’s the hard truth.

Major EHR providers and even smaller private networks own the infrastructure your data lives on and they make billions annually ensuring that only some of that data is portable. They are the landlords of your most intimate information.

The irony?

Your health data is one of the most valuable types of personal data. It's a gold mine for insurers, pharmaceutical companies, and research institutions. But if you want access to your child’s full immunization records or mental health history for a school transfer or second opinion, you often have to beg, wait, or pay.

Data Silos Are Dangerous

• A child with asthma may not have that diagnosis visible if they end up at an ER in another state.

• A woman who recently had a miscarriage may get prescribed medications at urgent care that would be contraindicated if only her records were shared.

• An elderly parent with dementia might go to a new neurologist who has zero visibility into their behavioral history or medication regimen.

These aren't hypotheticals. They're common. And the consequences range from frustration to life-threatening.

Why the System Is Broken

The incentives are misaligned. Data = power = money.

E____ and other legacy providers have no business interest in making patient data universally accessible. Even systems that claim to be interoperable only do so selectively. Most health systems pay extra for integrations or data sharing APIs. And patients especially caregivers of children, elderly parents, or chronically ill family members are stuck navigating this maze while juggling emotional and physical burdens.

What Needs to Change

1. Data Portability by Default Every patient should be able to instantly access and share their entire health history encrypted, portable, and comprehensive without jumping through administrative hoops or incurring fees.

2. True Interoperability Not just between hospitals in the same network but across all EHR systems. Blockchain and decentralized identity (DID) technologies show promise here, offering secure, auditable records that travel with the patient not the provider.

3. Patient-Centric Design Build health record systems that treat patients as the owners of their data. Not just in legal fine print but in practice, access, control, and consent management.

4. Legislation with Teeth The 21st Century Cures Act was a start, but we need stronger enforcement and penalties for systems that hinder access under the guise of privacy or proprietary infrastructure.

   
   

   

   
   

A Call to Action

If you’re a parent, a patient, or simply a human being who values control over your own life demand better.

Ask your providers if they support full data access.Push lawmakers to regulate EHR monopolies.Support technologies that decentralize health records and return control to individuals.

Your data should work for you not for the billion-dollar corporations profiting off your family's most sensitive information.

The future of healthcare starts with ownership.