There is no shortage of opinions about AI in healthcare. There’s the hype — AI will diagnose us all and fix a broken system. And there’s the backlash — it hallucinates, it’s dangerous, keep it away from medicine. What I couldn’t find anywhere was the voice in the middle: the patients actually using these tools, right now, to survive a system that often doesn’t have time for them.
So I asked.
Forty chronically ill patients from my community completed a long, demanding survey about how they really use AI for their health — not in theory, but at 11pm after a seven-minute appointment that answered nothing. These aren’t casual users. Most live with complex, contested conditions like POTS, EDS, MCAS, and endometriosis. The overwhelming majority have been dismissed or gaslit by the medical system. And what they shared was more nuanced — and more sophisticated — than either side of the AI debate would have you believe.
A few things stood out:
+ They use it constantly, but trust it almost not at all. 72% use AI to research their conditions, half use it to interpret their own lab results — yet only 2 of the 40 trust AI more than their doctors.
+ “Trust nothing, verify everything” is the whole strategy. The same patient who told me AI “gave me my life back” also keeps a list of the times it invented fake studies to back up its answers.
+ It’s not adopters versus skeptics. It’s one person doing both — leaning on AI for what rushed care can’t give, while fact-checking every word.
The full report breaks down who these patients are, exactly how they use AI, the wins and the harms in their own words, and what it all means for the healthcare, femtech, AI, and pharma teams building these tools.
To the patients who shared something this personal: thank you. This is your report as much as mine.
Download the full report (PDF)
Ilana Jacqueline is a Patient Advocacy Strategist who designs and runs research with an engaged community of chronically ill patients. To work together, get in touch at IlanaWrites@gmail.com.