The data that could have saved her was already there

Imagine being sick for years while every test comes back normal. Every doctor sees a piece of you, but nobody sees all of you. Somewhere along the way, you stop being a patient with a mystery and start being a problem to be managed.

That scenario is not rare. It is built into how healthcare works, almost everywhere. Most health systems are organized around specialties and episodes, not around whole people. A new symptom means a new specialist, and a new specialist usually means a new organization with its own record system. The information about you piles up where it was created: a lab result here, a cardiology report there, imaging somewhere else.

In the US, those systems often cannot exchange data with each other. In Europe we like to think we do better, but ask anyone who has moved between hospitals in the Netherlands or Germany how much of their history actually traveled with them. The names of the systems change. The fragmentation does not. And when records cannot move, patients become the couriers of their own data. Requesting copies. Collecting printouts. Carrying folders between waiting rooms.

I could keep this general. But I sat down with someone who lived every word of those opening paragraphs, and she would rather I told you her name.

Eight years

Denise St. Clair got sick on the plane home from her honeymoon in 1998. Vertigo and headaches. She blamed the scuba diving and waited for it to pass. It did not pass.

Over the following years, her health came apart one system at a time. She went to doctors by symptom, because that is how you enter healthcare: migraines and vertigo go to a neurologist, a racing heart goes to a cardiologist, and so on. Eventually every organ system in her body was affected. Eight years after that flight, she was in a wheelchair, barely able to hold her head up, with a migraine and vertigo that had never once let up.

The scans kept coming back clean. And when scans come back clean, something ugly happens: the doubt moves from the disease to the patient. Denise was told she had conversion disorder. That it was psychological. That she was, as she puts it, a hysterical woman looking for attention. The top neurologist in her state refused to see her again until she had a psychological evaluation. The psychologist she then saw told her she was remarkably together for someone who had been that sick, in that much pain, for that long. He also told her she looked like she had Parkinson’s.

Her response: “Can you guys get in a room?”

At one point she had a seizure in her doctor’s office and was rushed to the hospital. As she was coming out of it, she heard the doctor ask her husband whether she might have an eating disorder.

Through all of it, she knew she was dying. Her word for what kept her going is stubborn. She cried after the neurologist’s ultimatum. Then she asked: okay, what’s the plan?

A paper chart, inches thick

The plan was to see a specialist for every symptom she had, and to bring the evidence with her. That second part was harder than it sounds. Her records were scattered across every practice and organization she had ever visited, held in electronic systems that did not talk to each other. Getting copies meant formal requests and handwritten signatures, one organization at a time. She compiled the results into a paper chart she still describes with her hands held wide apart.

Then she did what came naturally to a PhD researcher: she organized it. Lab work with lab work, in chronological order. She did not know what pattern she was looking for. She just made it possible for a pattern to be seen.

A cardiologist agreed to look. He kept telling her she was too young, that it had to be one thing everyone was missing. Then, going through the chart page by page, he went quiet. What he had spotted, laid out in sequence for the first time, was her calcium level: rising, rising, rising, and by then at lethal levels. It had been sitting in routine blood work for years. It had simply never been visible as a trend, because nobody had ever seen the results side by side.

The diagnosis was hyperparathyroid disease. A tumor was driving her body to leach calcium from her own bones, coating her nervous system and disrupting, one by one, every organ it touched. A nuclear medicine scan confirmed it immediately. Denise laughed when it did.

“I kept telling the neurologist it wasn’t in my head. I was right. It was in my neck the whole time.” – Denise St. Clair

Surgery followed soon after. She had never expected to walk again. Two days after the operation she was walking. Like a duck, she says. But walking.

The part that should keep us up at night 

Here is what I cannot stop thinking about. No new test found Denise’s diagnosis. No breakthrough, no new technology. The data that could have saved her existed almost the entire time, sitting in systems that were working exactly as designed. Each doctor saw their piece. Nobody could see the whole picture.

And the fix was not a machine replacing a doctor. It was a doctor finally able to do what doctors are trained to do, because for once the full information was in front of him. Denise spent months doing by hand what our systems should do automatically: gathering the data and putting it in order, so that clinical judgment had something to work with. Interoperability does not replace that judgment. It is what makes it possible.

That is true in Minneapolis and Milwaukee, and it is just as true in Amsterdam, Berlin, and London. The person in that opening paragraph is sitting in a waiting room in every one of those cities today, repeating their history from scratch to a doctor who can only see a piece of them.

What this means now

Denise got sick in 1998. The question that has driven healthcare reform ever since is simple: why should assembling that chart have been her job?

The systems that failed her still exist in most countries, though some things have changed. Health systems around the world increasingly share a common language for exchanging data, an open standard called FHIR (Fast Healthcare Interoperability Resources).

It works less like a piece of software and more like a shared grammar, so that a lab result from one hospital and a scan from another can be read by any system that speaks it. In a growing number of countries, the rules now require patient data to be available electronically, to patients and across organizations.

What you can do

If you’re a patient: ask each of your doctors whether your records are shared electronically with your other providers, or whether you need to request and carry them yourself. You have a legal right to request your own records.

If you work in healthcare: if you’re the one chasing down records between departments or practices, that is worth flagging to whoever owns your data infrastructure, not something to quietly work around.

Denise did not stop there. She went on to help write some of the rules that changed this, and that is the next part of her story.

Watch our full conversation about what happens when interoperability fails.