A patient story, and the case it makes
When interoperability fails, nobody sees the whole picture
Somewhere between the systems, the data stops. The patient doesn’t. This is what interoperability means when it stops being a specification: eight years of one person’s life, and the case for making sure it does not happen to the next person.
This is what interoperability changes
in the real world
Denise St. Clair spent eight years being dismissed and misdiagnosed while her data sat in disconnected systems. The information that could have diagnosed her existed. It just wasn’t possible to see it all together.
Then she went to work on the other side of it at CMS, the US agency that runs Medicare and Medicaid, where she helped write the first US regulation to require FHIR, before working on what became the prior authorization rule. She later became a patient relying on it, when the approval for her own treatment came back in one hour instead of weeks.
“Everyone was looking at their piece, but they couldn’t see each other’s data. And no one was seeing the whole picture.”
Denise St. Clair
VP Health Policy and Interoperability, Global Alliant · Former CMS · Helped write the first US rule requiring FHIR
This is what broken interoperability looks like
Eight years without a diagnosis while the answer sat in her records.
And then, years later, a life-saving approval that came back in one hour.
Firely CEO Martine Berden in conversation with Denise St. Clair
Three moments that changed everything
A patient who waited eight years for a diagnosis. An approval that came back in one hour. A 200% return on investment. Three clips, three reasons this matters.
The data that saved my life
Approved in one hour
Over 200% ROI
Eight years, no diagnosis.
This is what a patient goes through.
Year 1
It started long before anyone noticed
Symptoms that didn’t connect. Specialists who each saw one piece of the picture.
Year 2
The data existed. Nobody could see it.
Test results, referrals, and panels, spread across systems that never talked to each other.
Year 4
The system stopped looking
Dismissed. Misdiagnosed. Told the problem was something else entirely.
Year 8
Someone finally read the whole chart
Not because the data changed. Because for the first time, it was all in one place.
Current day
One hour
Prior authorization approved, because the request was submitted electronically and the data arrived with it.
The whole picture
In four blogs, Firely CEO Martine Berden tells the story of what fragmented health data costs a real person, and what happens when the system finally works.
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