“Give us our damn data,” urged Dave deBronkart – also known as e-patient Dave – during his powerful plenary keynote address on the transformative trend toward patient autonomy. This movement, driven by advances in digital tools and AI, allows patients to take control of their health, make informed decisions and manage their care more effectively.
The session opened with a powerful Reformation analogy, highlighting how technological advances, such as printing then and AI today, can revolutionize access to information. deBronkart, himself a cancer survivor, explained how being an empowered and informed patient helped save his life, emphasizing the potential of patient autonomy.
A key example of this empowerment is the use of AI tools like ChatGPT to interpret medical information. To demonstrate, deBronkart showed how pasting medical notes into GPT transformed complex medical jargon into clear, actionable pieces. “It makes it easier for me to understand what I need to do,” he explained.
Empowerment, as deBronkart detailed, involves removing constraints and providing resources and social permission. But, while key industry voices were quick to caution against giving patients broader access to GenAI and health data, citing various hypothetical security and process issues, for deBronkart, the Real-world patients are already showing the vast potential for patient empowerment through AI.
To illustrate this, deBronkart highlighted two key examples. In the first case, a father of two children with rare diseases, having recognized the lack of information between their children’s different specialist doctors, used a GPT to organize and interpret their medical data, providing a unified view that is lacking even to their doctors’ systems. In the second example, after a young man’s father developed a rash and was faced with the unpleasant reality of waiting months to see a dermatologist for diagnosis and treatment, with few other options available, the man turned to a GPT for differential diagnosis. , using photos. After a few moments, the GPT was able to provide a table of potential diagnoses, complete with clinical reasoning and actions to take.
“Mind you, he didn’t abandon the doctors,” deBronkart said. “He was exploring to try to figure out what they could do while waiting for the doctor. Within 10 days the rash started to improve.
As deBronkart argued, by leveraging AI and digital tools, patients can take proactive steps in their healthcare journey, thereby reducing the burden on the healthcare system and improving outcomes.
“Patient autonomy is the freedom to pursue our health goals on our own terms, even beyond the clinic,” he concluded. “The freedom to persevere, to persist, to keep asking and inquiring, to seek more and better answers to our own self-defined wants and needs.”