Your medical chart has an opinion about you — and you can read it

I have medical records from my old hemophilia treatment center in Wisconsin dating back to the 1990s. Over the years, those old documents have turned out to be some of the most powerful tools in my healthcare journey.

I was diagnosed in the ’90s with a rare platelet disorder on top of factor IX deficiency, or hemophilia B, and von Willebrand disease. The platelet disorder is so rare that it may not even have a name. If you ask me what it is, I have to refer to my records. And that’s exactly the point: Today, I don’t have to reconstruct it from memory or try to explain something I can’t fully articulate. The records spell it out — the diagnosis and the exact lab results. I hand them to a provider, and the information speaks for itself.

My life in the ’90s would have been simpler if my parents had kept my records from the ’70s. I was diagnosed with bleeding disorders as a child, but when I got a new hematologist in the ’90s, she started from scratch. When my test results indicated von Willebrand disease, she stopped there. It took years — and a lot of suffering — to uncover the accompanying factor IX deficiency and the platelet disorder that presumably had been identified when I was a child.

I spent years saying the treatment wasn’t working — years of being right but not believed. I was unable to have children because the bleeding was that bad. That is what delayed diagnosis costs. If the earlier records had existed and traveled with me, my story might have been very different.

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What your chart says about you

Here’s something worth knowing: Your records aren’t just data. They’re a narrative — written by someone else, about you, in a prose you may have never seen.

For people with bleeding disorders — a community that already has to fight to be believed — what gets written in the chart carries unusually high stakes. It travels with you to every new provider, every emergency department, every specialist who sees your name before they see your face.

A 2023 peer-reviewed study found that 84.8% of clinicians surveyed reported omitting specific information from their notes after patient record access laws went into effect. The system changed its behavior when it knew we were watching. Time to start watching.

How to access your records

Check your patient portal for every provider, every visit. That means your hematologist, your primary care doctor, your orthopedist, your ER visit, your specialist consult. Clinical notes should appear within 24 hours of your appointment.

Then read the notes like a detective. I have found numerous errors in my own records — an incorrect referring doctor, wrong medications, inaccurate details about my medical history. These aren’t small things. A mistake in your chart can follow you from provider to provider and quietly shape the care you receive. Look for omitted pain levels, psychological framing of physical symptoms, and facts that simply don’t match what you said or what happened. You have the right to request corrections, and it’s worth correcting the record when you find something wrong.

Finally, download your records and build your own file. The pattern across years is often more medically meaningful than any single visit or test result — and no one is going to maintain that record for you.

I still carry mine from the 1990s — and they have never stopped being useful. Start your file today. Your future self will thank you.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.