Patient Information vs Healthcare Provider Information: How Label Differences Affect Your Care

When you read your medical record and see "poorly controlled DM", do you think you’re being judged? Or do you think it means your blood sugar is too high? This isn’t just a misunderstanding-it’s a gap that’s been quietly hurting patient care for decades.

Healthcare providers write notes using a language built for efficiency, billing, and clinical precision. Patients experience illness in a completely different way-through fatigue, fear, confusion, and daily struggles. These two versions of the same story rarely match up. And when they don’t, it leads to mistakes, missed appointments, and even dangerous medication errors.

What’s Written vs. What’s Understood

Doctors use terms like hypertension, hyperlipidemia, or ICD-10 code E11.9 because those are the standardized codes required by insurance systems and electronic health records (EHRs) like Epic and Cerner. But patients don’t speak that language. In a 2019 study, 68% of patients didn’t understand common medical terms. Forty-two percent didn’t know hypertension meant high blood pressure. Sixty-one percent didn’t recognize colitis as an inflamed colon.

Meanwhile, patients describe their symptoms in plain, personal terms: "I’m always tired," "My feet feel numb," "I can’t sleep because my chest hurts." These aren’t just complaints-they’re vital clues. But if a provider doesn’t translate them into the system’s language, those clues get lost.

One patient on PatientsLikeMe wrote: "My doctor wrote 'poorly controlled DM' in my chart. I thought it meant I was a bad person." That’s not a failure of the patient. That’s a failure of the system.

Why the Labels Are So Different

Healthcare providers aren’t trying to confuse you. They’re following rules. Since 2015, U.S. hospitals have been required to use ICD-10-CM codes for every diagnosis. These codes are numbered, precise, and designed for billing and population health tracking. A single code like E11.9 stands for "Type 2 Diabetes Mellitus without complications." That’s useful for insurers and researchers-but it tells you nothing about how the patient feels.

On the patient side, there’s no official code for "I’m scared to take my pills because they make me dizzy." There’s no form to check for "I don’t understand why I need three different pills for the same problem." So those things go unrecorded in the system-until they cause a problem.

Meanwhile, the health information management (HIM) professionals who manage these records are trained to balance both worlds. They spend over 1,200 hours learning how to translate clinical notes into codes, while also protecting patient privacy under HIPAA. But they’re not always the ones talking to you during your visit.

The Real Cost of the Language Gap

This isn’t just about confusion-it’s about safety. Dr. Thomas Bodenheimer, a former professor at UCSF, found that miscommunication between patients and providers contributes to 30-40% of medication errors. That’s not a small number. That’s thousands of people each year taking the wrong dose, skipping doses, or stopping meds because they thought the doctor was blaming them.

A 2022 survey by the American Medical Association found that 57% of patients felt confused by the terms in their medical records. Thirty-two percent said they avoided follow-up care because of it. That’s not just bad for your health-it’s bad for the system. Hospitals now get paid based on how well patients report their experiences. The CMS HCAHPS survey includes questions like: "Did your providers explain things in a way you could understand?" If you say no, the hospital loses money.

And it’s not just patients who are frustrated. A 2023 Medscape survey showed 64% of physicians spend 15 to 30 minutes per visit just explaining basic terms. That’s time taken away from actual care.

What’s Being Done to Fix It

Some places are making real progress. Since 2010, Kaiser Permanente has let patients read their doctors’ notes through its "Open Notes" system. By 2021, they saw a 27% drop in patient confusion and a 19% increase in medication adherence. Patients weren’t just reading notes-they were understanding them.

Mayo Clinic built "plain language" templates into its EHR. When a doctor types "myocardial infarction," the system automatically shows "heart attack" in the version the patient sees. In their pilot program, patient confusion dropped by 38%.

The government is pushing too. The 21st Century Cures Act of 2016 made it illegal for providers to block patients from accessing their own records. By April 2021, every hospital had to let you see your clinical notes. And now, 89% of U.S. hospitals do-up from just 15% in 2010.

The World Health Organization’s ICD-11, rolled out in 2022, added patient-friendly descriptions alongside clinical codes for the first time. And new tech like Google Health’s Med-PaLM 2 can now convert clinical notes into plain language with 72% accuracy. It’s not perfect yet-but it’s getting closer.

What You Can Do Right Now

You don’t have to wait for the system to change. Here’s what works:

• Ask for plain language. After your doctor says "hypertension," say: "Can you say that in words I’ll understand?"
• Use the teach-back method. After they explain something, say: "So, just to make sure I got it-you’re saying I need to take this pill twice a day because my blood pressure is too high. Is that right?" This cuts misunderstandings by 45%, according to JAMA Internal Medicine.
• Read your notes. If your provider uses MyChart or another patient portal, log in and read your visit summary. If something sounds wrong or confusing, call and ask.
• Write down your symptoms in your own words. Before your visit, jot down: "What’s happening? When did it start? What makes it better or worse?" Bring that list. It helps your provider connect your story to their codes.

The Future Is Starting Now

By 2027, experts predict 60% of electronic health records will have real-time translation features-turning "hyperglycemia" into "your blood sugar is too high" on the spot. That’s not science fiction. It’s already being tested in pilot programs across major health systems.

The goal isn’t to replace medical terminology. It’s to make sure you’re not left out of the conversation. Your experience matters. Your words matter. And you have the right to understand what’s written about you.

The system isn’t perfect. But you’re not powerless. The more you ask, the more you read, and the more you speak up-the faster this gap closes. Because your health isn’t just a code in a database. It’s your life. And you deserve to understand it.