What Does It Mean to Own Your Health Data
The moment I realized I didn’t own my health data came in an emergency room at 2 AM in March 2024.
My wife had collapsed during a business trip in Chicago. I was in San Francisco, trying to help the ER doctor understand her medical history over the phone. She had years of heart rhythm data on her Apple Watch. Continuous glucose patterns on her Levels app. Sleep and recovery metrics on her Oura Ring. Recent blood work in Quest’s portal. Previous cardiac workup in her cardiologist’s Epic system.
None of it was accessible to the doctor trying to save her life.
I knew the passwords to her investment accounts, her email, her social media. But I couldn’t access the health data that might explain why a healthy 38-year-old suddenly lost consciousness. Each platform required separate authentication. Some needed biometric verification from her unconscious thumb. Others had no emergency access protocols at all.
She recovered, thankfully. The cause was ultimately benign—a vasovagal response to dehydration combined with exhaustion. But those three hours of digital helplessness revealed something profound about health data ownership. We generate it. We pay for the devices that collect it. We assume it belongs to us. But when we need it most, we discover we’re just tenants in our own biological story.
The Architecture of Digital Feudalism
Dr. Shoshana Zuboff at Harvard Business School calls this “surveillance capitalism,” but in healthcare, it’s something more specific. It’s data feudalism. We work the land (generate the data), but the lords (platforms) own the harvest.
The average American has health data scattered across 23 different platforms, according to a 2024 Stanford Medicine study. Each platform treats your data as their competitive advantage. Apple guards HealthKit data behind iOS walls. Fitbit locks information in Google’s ecosystem. Your hospital wraps records in Epic’s proprietary format. Your insurance company hoards claims data like treasury bonds.
The legal reality is stark. Under current U.S. law, the company that collects health data generally owns it, not the person who generates it. The 21st Century Cures Act requires some interoperability, but only for traditional medical records. Your wearable data, fitness metrics, nutrition logs, and meditation patterns exist in a legal gray zone where possession equals ownership.
Europe’s GDPR grants a “right to data portability,” but try actually exercising it. I spent six weeks attempting to consolidate my health data from various platforms. The result was 14 different file formats, incompatible time stamps, and data dumps so poorly structured that making sense of them required custom code. Legal right to access doesn’t equal practical ability to use.
The Hidden Cost of Fragmentation
When Dr. Eric Topol studied medical errors at Scripps Research Institute, he found something alarming. Forty percent of serious diagnostic errors could have been prevented with complete patient data. Not new tests or procedures—just connecting information that already existed but wasn’t visible.
My wife’s ER incident exemplifies this. Her Apple Watch had recorded subtle arrhythmias in the weeks before her collapse. Her CGM showed reactive hypoglycemia patterns. Her Oura indicated accumulating sleep debt. Connected, these painted a clear picture of autonomic nervous system dysfunction from overwork. Separated, they were invisible signals that no one doctor could see.
The economic impact is measurable. McKinsey estimates that health data fragmentation costs the U.S. healthcare system $316 billion annually through duplicated tests, missed diagnoses, and inefficient care coordination. But the human cost is what matters. People die from preventable conditions because critical patterns remain hidden in disconnected databases.
What True Ownership Would Look Like
Real health data ownership would mean three fundamental rights that don’t currently exist.
First, unilateral access. You should be able to retrieve all your health data from any platform, in standardized formats, without justification or limitation. Not exports in proprietary formats. Not summaries missing raw data. Complete information in formats that other systems can interpret.
Second, selective sharing. You should control exactly who sees what, for how long, and for what purpose. Your cardiologist needs your heart data, not your psychiatric records. Your trainer needs your fitness metrics, not your genome. Current systems offer all-or-nothing sharing that violates the principle of least privilege that governs every other secure system.
Third, economic participation. If your data generates value—through research, drug development, or algorithm training—you should participate in that value. Right now, tech companies monetize population health data worth an estimated $96 billion annually. The people generating that data receive nothing except targeted ads for supplements.
Tim Berners-Lee, inventor of the World Wide Web, is building Solid, a protocol for true data ownership. Users store their data in personal online data stores (PODs) that they control completely. Applications request permission to access specific data for specific purposes. The user remains sovereign.
But we don’t need to wait for new protocols. The technology for health data ownership exists today. What’s missing is the will to implement it.
The Path Forward
Companies like moccet are pioneering a different model. Instead of trapping data in their platform, they act as an intelligence layer that connects to wherever your data lives. You maintain ownership. They provide intelligence. It’s the difference between a bank that holds your money and a financial advisor who helps you invest it.
This model works because it aligns incentives correctly. Platforms succeed by providing value through intelligence, not by hoarding data. Users maintain sovereignty while gaining insights. Healthcare providers get complete pictures instead of fragments.
True ownership of health data would transform medicine from reactive treatment to proactive prevention. When you own your complete biological history, patterns become visible, prevention becomes possible, and healthcare becomes personal rather than population-based. Your data stops being a product and becomes a tool for your own optimization.
The emergency room doctor treating my wife never did see her wearable data. He made educated guesses based on limited information, and fortunately, guessed right. But we shouldn’t have to rely on fortune when the complete story exists, trapped in databases we can’t access when we need them most.
Owning your health data isn’t about privacy or control. It’s about survival.
moccet connects all your health data to show patterns you can’t see alone. Join the waitlist at moccet.ai