The story of one patient's fight against triple-negative breast cancer—and the barriers that prevented her medical records from advancing life-saving research.
A true story that sparked a mission to transform healthcare data exchange
Triple-negative breast cancer is one of the most aggressive and difficult-to-treat forms of breast cancer. Unlike other breast cancers, it doesn't respond to hormone therapy or targeted treatments, leaving chemotherapy and surgery as the primary options. For patients fighting this disease, every piece of medical data—every scan, every test result, every treatment response—could hold the key to better outcomes for future patients.
But what happens when that critical medical data becomes trapped?
One patient's journey through triple-negative breast cancer revealed a devastating gap in our healthcare system. Throughout her treatment—biopsies, imaging scans, pathology reports, treatment protocols, and response data—she accumulated a comprehensive medical history that could have been invaluable to AI researchers and clinical trials working to improve outcomes for triple-negative breast cancer patients.
Despite her willingness to contribute her medical records to research, hospital policies, insurance restrictions, and medical procedure requirements created an impenetrable wall. Her complete medical history—X-rays, MRIs, CT scans, pathology slides, genetic testing results, and treatment response data—remained locked within disparate hospital systems, unavailable to the research labs and AI initiatives that desperately needed it.
Her records were scattered across multiple hospital systems—oncology center, imaging facilities, pathology labs, and surgical centers—each with their own incompatible record systems.
Medical imaging was provided on CD-ROMs that became unreadable over time, making it impossible to share with research institutions even when she obtained physical copies.
Requesting her own medical records required navigating bureaucratic processes, waiting weeks for responses, paying fees, and often receiving incomplete information.
There was no standardized, secure way to share her comprehensive medical history with research labs—even when she desperately wanted to contribute to finding better treatments.
AI labs developing better diagnostic tools for triple-negative breast cancer lacked access to real-world patient data that could train their models and improve early detection.
The weeks and months spent trying to gather and transfer records meant missed opportunities to participate in clinical trials and contribute to cutting-edge research.
Her medical data could have advanced research. Her scans could have trained AI models. Her treatment journey could have informed better protocols. But medical procedure restrictions and fragmented record systems created barriers that even the most motivated patient couldn't overcome.
This isn't just about one patient. Thousands of patients fighting triple-negative breast cancer face the same barriers every year. Their collective medical data—representing diverse populations, treatment responses, and disease progressions—remains trapped in isolated systems, unavailable to the researchers working to develop better treatments, earlier detection methods, and ultimately, a cure.
"Patients shouldn't have to fight their own healthcare system to contribute their medical data to life-saving research. Every barrier we remove could save lives."
USEHRE was founded to ensure no patient ever faces these barriers again. We're building the standards and frameworks that will enable:
Every patient fighting triple-negative breast cancer—or any serious disease—should have the power to turn their medical journey into hope for others. USEHRE is building the standards and frameworks to make this vision a reality.
Join us in transforming healthcare data exchange—so every patient's medical journey can advance research, improve treatments, and save lives.