There's a pattern in digital health that I've watched repeat itself for a decade.
A company builds something. It's smart. It has great UX. It passes all the tests. And then a patient tries to use it and discovers it doesn't actually solve any of their problems. Not because it's badly designed. Because it was designed without them.
I spoke at Digital Health Ljubljana about this gap. The one between technological innovation and the lived reality of the people these tools are supposedly built for.
Here's what happens: engineers design something that solves a theoretical problem. Investors love it because it's elegant. Regulators approve it because it meets compliance. And patients can't use it because it requires energy they don't have, or assumes a body that works differently than theirs, or solves a problem that wasn't actually their biggest problem.
Nobody's being malicious. It's just that nobody asked.
I have POTS. I can't sit for long periods. Most health apps assume you can open your phone, fill out a form, track metrics, sync data. For me, that's a three-step process: get the phone, find the app, wait for my heart rate to come down from the exertion. By then, I've forgotten what I was tracking.
A real digital health tool for POTS would know this. It would work with one hand. It would have dictation instead of typing. It would sync automatically. It would be designed by someone who's actually had to use it while lying down.
The innovation gap exists because we've separated the people who design from the people who use. We have product teams and user testing, which is good. But we don't have lived-experience designers — people with chronic illness, disability, complex mental health — actually building these things from the inside.
That's starting to change. Slowly. And when it does, the apps get better overnight. Not fancier. Better. They actually solve problems that matter.
The conversation at Digital Health Ljubljana was about how to make this the default, not the exception. How to build the requirement of lived experience into product development the same way we build in security and compliance.
Because right now, every digital health tool is being beta-tested on patients. That's backwards.
Listen to the full conversation: Patient voices in Digital Health products on Chronically.