Who Really Owns Your Health Data? With: Jason Alan Snyder
Jason Alan Snyder tackles the complex question of health data ownership, arguing that individuals—not corporations—should control their medical information. Despite legal rights under HIPAA, patients face significant barriers to accessing their own data, which is often siloed, unstructured, and inaccessible in a useful form. Snyder notes that providers, labs, pharma, and tech platforms profit from patient data while offering little in return to its source—the patient. He calls for systems that unify fragmented data, create portability and usability, and enable individuals to profit from their health information ethically and securely.
Episode Contents:
About the Guest
Jason Alan Snyder is a futurologist, inventor, and technologist with deep expertise in AI, data systems, and ethical innovation. Learn more at: https://www.evilrobot.com/
Key Takeaways
- Patients legally own their data but face barriers to access.
- Healthcare data is siloed and scattered across entities.
- True ownership requires portability, usability, and profit potential.
Transcript Summary
Who should own health data?
Individuals should own their health data, as it reflects their biological, behavioral, and genetic identity.
Why is accessing personal health data difficult?
Data is siloed among providers, labs, tech companies, and wearables, often unstructured and inaccessible in usable form.
How can we improve?
Develop systems that unify data, enhance transparency, and give patients the tools to control and monetize their information.
More Topics
- AI in Patient Care
- AI in the Healthcare Industry
- AI and Medical Innovation
- Healthcare Ethics and Policy
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About the Series
AI and Healthcare—with Mika Newton and Dr. Sanjay Juneja is an engaging interview series featuring world-renowned leaders shaping the intersection of artificial intelligence and medicine.
Dr. Sanjay Juneja, a hematologist and medical oncologist widely recognized as “TheOncDoc,” is a trailblazer in healthcare innovation and a rising authority on the transformative role of AI in medicine.
Mika Newton is an expert in healthcare data management, with a focus on data completeness and universality. Mika is on the editorial board of AI in Precision Oncology and is no stranger to bringing transformative technologies to market and fostering innovation.