21/02/2025
Imagine being denied access to your own medical data. How is this still possible in 2024?
Yesterday, our colleagues Koen Dewit and Peter Dedene were invited to the final « Save Data » project seminar, showcasing our developer experience in building a patient survey platform for the TTP community (a rare, life-threatening blood disorder) built using Solid pods - technology that puts data ownership back where it belongs: with patients.
One story particularly resonated: a rare disease patient struggling to share her hospital records with researchers specializing in her condition. These researchers could drive breakthroughs in treatment, yet bureaucratic and commercial barriers block this vital data exchange. In 2024, this shouldn't be happening.
The panel discussions dove deep into critical health data challenges - from data governance and data quality to the delicate balance between regulation and innovation.
Then there's the trust factor. Your health data is invaluable for medical research, but who ensures it won't be sold to third parties? This is exactly why we need trusted organizations (like i.e. Athumi) who can protect and manage health data while keeping citizens in control of their information.
As a digital product studio, our work typically happens behind the scenes - in design sessions and development sprints. That's why we were very excited to tell about our story collaborating with VITO, Takeda, and Sanofi - demonstrating how cutting-edge technologies can build systems that respect both strict medical regulations AND put patients in control of their data.
The message was clear: Start building. Start collaborating. Let's unlock the potential of responsibly shared health data to transform patient care.
🤔 What's your experience with health data ownership? Have you ever struggled to access your own medical information?