I want to tell you the story of two patients.
The first is your spouse. The healthy one. The one who sees a doctor once a year for psoriatic arthritis, has been on the same medication for a decade, and has never once logged into MyChart. Not to book an appointment—you handle that. Not to read an after-visit summary. Not to check listed allergies. Not to make sure anything is accurate or up to date.
One day, he takes a spill at work—trips and lands on a rusty nail.
In the ER, they ask, “Are all your allergies up to date?”
He’s distracted. There’s still a nail in his thigh. He nods, asks how long this will take.
An hour later, he’s covered in hives.
He has an allergy to cephalexin.
When the doctor comes back to treat the reaction spreading across his body, he asks, “Why didn’t you tell us you had an allergy?”
And your spouse says, “I told my rheumatologist. Isn’t it in my records?”
No. Of course it isn’t.
Because if he had ever reviewed his chart, he would have seen the wrong antibiotic listed as his allergy. He would have seen a diagnosis of tuberculosis he never had. He would have seen that he’s still marked as taking steroids he hasn’t touched in five years.
—
The second patient reads her MyChart notes like they matter—because they do.
She’s reported every allergy. Updated every medication. She reads every note from every provider. She manages a complex disease and its comorbidities with precision. Ten specialists. Years of documentation. She knows her body, her history, her record.
So when she’s hospitalized for the third time this year, it’s disappointing—but not surprising.
She’s in eight out of ten pain. Sitting in a hospital bed, trying to distract herself. Coloring books. A Korean drama playing on her laptop. Deep breathing exercises her palliative care team taught her. She’s struggling—but she’s composed. She requests her pain medication on time. She’s kind to her nurses.
And when the doctor walks in, he questions whether she’s really in pain at all.
Could she just be stressed?
He doesn’t quite understand why she needs to be hospitalized. She looks fine.
She can’t understand how he could make that judgment after reviewing her records—after everything that led her here—when he’s only just met her.
What she doesn’t know is this:
Her nurses have been charting her stay.
Polite, but insistent about pain medication. Appears comfortable. On her phone. Watching TV. No visible distress beyond self-report.
Those notes—the ones she cannot see in MyChart—become the lens her doctor reads her through.
Her years of documented disease. The agony that brought her to the ER. The urgent appointments that led to this admission.
All of it—outweighed by a version of her she doesn’t even know exists.
Technically, in a world where all patients know and understand their rights, the system, and the technology and politics needed to navigate it — Their full medical record is available to them.
But where we are today? We’re just one rusty nail, one coloring book away from being failed by the medical system.
So whatever it is you’re building based on the electronic medical records that both exist and that patients know how to navigate — It had better account for the reality these two patients experience.
And if YOU are reflected in one of these patient stories, you should really access this free resource I created for all patients to see your HIDDEN MyChart so your story can have a different ending entirely.
If you’re building something without the patient POV? I work with companies all over the country to make sure, like an unlisted allergy, they don’t end upburied by their blindspots.