Patient Information vs Healthcare Provider Information: How Labels Create Confusion and What’s Being Done

Patient Information vs Healthcare Provider Information: How Labels Create Confusion and What’s Being Done

Medical Term Translator

Understand Your Medical Records

Enter medical terms or codes from your health records to see plain language explanations. This tool helps bridge the gap between clinical jargon and patient understanding.

Examples: E11.9, Hypertension, Dyspnea, DM, CPT

Why Your Doctor’s Notes Don’t Sound Like You

You get your lab results back. Your doctor wrote "Type 2 Diabetes Mellitus, E11.9". You read it and feel confused. Was that a diagnosis? A warning? A judgment? You didn’t say "E11.9". You said, "I’m always tired, I’m peeing all night, and I can’t stop drinking water."

This isn’t just a mismatch in words. It’s a gap in understanding that’s been hiding in plain sight for decades. Healthcare providers use coded language to document care. Patients use lived experience to describe illness. And when those two worlds collide - in charts, portals, and conversations - misunderstandings happen. Often, they lead to missed meds, avoided appointments, and even harm.

How Providers Label: Codes, Charts, and Compliance

When a doctor writes in an Electronic Health Record (EHR), they’re not just telling a story. They’re coding for billing, research, and legal protection. That’s why you see terms like ICD-10 and CPT codes. ICD-10 has over 70,000 diagnosis codes. CPT has more than 10,000 procedure codes. These aren’t random. They’re standardized. Every code maps to a specific payment rate, insurance rule, or public health statistic.

Systems like Epic and Cerner - used by more than half of U.S. hospitals - are built around these codes. They help hospitals get paid. They help researchers track disease trends. But they don’t help you understand why you feel awful.

Providers are trained to use precise language. "Hypertension" instead of "high blood pressure." "Dyspnea" instead of "I can’t catch my breath." It’s efficient. It’s accurate. But it’s not human.

How Patients Experience: Stories, Symptoms, and Fear

Patients don’t think in codes. They think in sensations and fears. "My chest feels tight when I walk up the stairs." "I’ve been dizzy for three weeks and no one listens." "I’m scared this pill will make me sick again."

A 2019 study in the Journal of General Internal Medicine found that 68% of patients didn’t understand common medical terms. Forty-two percent didn’t know "hypertension" meant high blood pressure. Sixty-one percent couldn’t define "colitis." That’s not ignorance. That’s poor communication.

And when patients see terms like "poorly controlled DM" in their portal, they don’t think "diabetes management needs adjustment." They think, "I’m failing. I’m not doing enough." One patient on PatientsLikeMe wrote, "I thought my chart said I was a bad person, not that my sugar was high."

That’s the emotional cost of mislabeled information. It doesn’t just confuse - it shames.

Two sides of healthcare: provider codes vs patient experiences, connected by plain language bridge.

The Bridge: Health Information Management Professionals

There’s a hidden group of people working behind the scenes to fix this. They’re called Health Information Management (HIM) professionals. These are the coders, transcriptionists, and data stewards who translate provider notes into structured data - and sometimes, back into plain language.

They’re certified by AHIMA and trained in both medical terminology and patient privacy laws like HIPAA and the HITECH Act. Their job? Make sure records are complete, accurate, and protected. But increasingly, they’re also asked to make them understandable.

They’re the ones who ensure 95% coding accuracy for Medicare reimbursement. They’re also the ones who help hospitals design patient-friendly versions of clinical notes - translating "myocardial infarction" to "heart attack," or "polyneuropathy" to "nerve damage causing numbness in feet."

Real-World Consequences: When Labels Cause Harm

The numbers don’t lie:

  • 30-40% of medication errors come from communication breakdowns, according to Dr. Thomas Bodenheimer.
  • 57% of patients feel confused by medical terms in their records (American Medical Association, 2022).
  • 32% avoid follow-up care because they don’t understand what’s written.
  • 64% of doctors spend 15-30 minutes per visit just explaining terms.

It’s not just about confusion. It’s about trust. When patients don’t understand their records, they stop trusting them. And when they stop trusting their records, they stop trusting their care.

One hospital system found that after patients could read their own notes - through the OpenNotes initiative - medication adherence went up 19%. Confusion about diagnoses dropped 27%. That’s not magic. That’s clarity.

Side-by-side clinical term and patient-friendly translation on a tablet screen with friendly AI helper.

What’s Changing: New Rules, New Tools

Things are shifting - fast.

The 21st Century Cures Act (2016) forced providers to give patients access to their clinical notes without editing. By April 2021, that became law. Suddenly, patients could see everything - including terms they didn’t understand.

So hospitals had to adapt. Today, 89% of U.S. hospitals let patients view their notes - up from just 15% in 2010. And now, more than 55 million patients across 350+ organizations can see their records through OpenNotes.

New standards are helping too. The WHO’s ICD-11, launched in 2022, now includes patient-friendly descriptions alongside clinical codes. The HL7 FHIR standard - adopted by 78% of major U.S. health systems - lets EHRs show two versions of the same note: one for providers, one for patients.

And now, AI is stepping in. Google’s Med-PaLM 2 can convert clinical notes into plain language with 72.3% accuracy. It’s not perfect yet - 95% is the goal for clinical use - but it’s a start.

What Works: Plain Language, Teach-Back, and Trust

There’s no single fix. But there are proven strategies:

  • Plain language templates - Mayo Clinic’s pilot program reduced patient confusion by 38% by auto-translating medical terms in patient-facing documents.
  • Teach-back method - providers ask patients to repeat back what they heard. A 2018 JAMA study showed it cuts miscommunication by 45%.
  • OpenNotes - when patients see notes in real time, they ask better questions, take meds as prescribed, and feel more in control.

It’s not about dumbing down medicine. It’s about speaking clearly. You wouldn’t hand someone a manual written in Mandarin and expect them to fix their car. Why do we expect patients to understand medical jargon without translation?

The Future: When Systems Speak Both Languages

By 2027, the American Medical Informatics Association predicts 60% of EHRs will have real-time terminology translation built in. Imagine logging into your portal and seeing:

Provider note: "E11.9 - Type 2 Diabetes Mellitus, without complications"
Patient view: "You have type 2 diabetes. Your body doesn’t use insulin well. We’ll help you manage it with diet, movement, and medicine."

That’s the goal. Not to erase medical language - but to add a second layer. One that speaks to the person, not just the diagnosis.

This isn’t a tech problem. It’s a human one. And fixing it means recognizing that your story matters as much as your code.

Why do doctors use medical jargon instead of plain language?

Doctors use medical terms because they’re precise, standardized, and required for billing, legal records, and research. Systems like ICD-10 and CPT codes ensure consistency across hospitals and insurance claims. But that doesn’t mean they’re meant for patients. The problem isn’t the jargon itself - it’s when patients never get a plain-language version.

Can I ask my doctor to rewrite my medical notes in plain language?

Yes - and you should. Many hospitals now offer patient-friendly versions of notes automatically. If yours doesn’t, ask your provider or the medical records department. You have the right to understand your health information. Saying "I don’t understand this term" isn’t being difficult - it’s being responsible for your care.

What’s the difference between ICD-10 and CPT codes?

ICD-10 codes describe diagnoses - like "Type 2 Diabetes" or "High Blood Pressure." CPT codes describe procedures - like "blood test," "MRI," or "annual physical." ICD-10 tells what’s wrong. CPT tells what was done. Both are used for billing, but only ICD-10 is used to track disease patterns in public health.

How does OpenNotes help patients understand their records?

OpenNotes lets patients read their doctors’ visit notes in real time - before, during, or after the appointment. Studies show that when patients see what’s written, they remember instructions better, take meds correctly, and feel more involved in decisions. Some hospitals now add side-by-side translations: clinical terms on one side, plain language on the other.

Is AI going to fix the labeling gap between patients and providers?

AI tools like Google’s Med-PaLM 2 can convert clinical notes into plain language with good accuracy - around 72%. But they’re not ready to replace human judgment. The goal isn’t to automate understanding - it’s to support it. AI can suggest translations, flag confusing terms, and help HIM staff work faster. But only a human can know if a translation feels right to a patient.

What should I do if I don’t understand my medical records?

Don’t pretend you get it. Write down the terms you don’t understand. Call your provider’s office and ask for a plain-language explanation. Many clinics have patient navigators or health educators who specialize in this. You can also ask for a copy of your records and bring them to a trusted friend or family member to help you read them. Understanding your health isn’t optional - it’s your right.

14 Comments

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    Meghan Rose

    November 6, 2025 AT 09:27
    I saw my chart once and it said 'non-compliant.' I cried. I took every pill. I changed my diet. But they still wrote that like it was my fault. No one ever asked me why I couldn't afford the meds or why the side effects made me feel like death. This isn't about codes. It's about being seen.
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    Steve Phillips

    November 7, 2025 AT 17:57
    Oh. My. GOD. This is the most *gloriously* accurate takedown of medical elitism I’ve ever read! I mean-E11.9?! That’s not a diagnosis, that’s a *cryptic incantation* from a medieval grimoire! And Epic? More like E-PIC FAIL. They’re not documenting care-they’re documenting billing cycles with the soul of a spreadsheet. Someone get this man a Pulitzer… or at least a free MRI.
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    Rachel Puno

    November 9, 2025 AT 16:37
    You’re not alone. I used to avoid my portal because I felt stupid. Then I started printing my notes and reading them out loud to my dog. He didn’t judge. Neither should your doctor. Ask for plain language. It’s your right. You’re not being difficult-you’re being brave.
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    Clyde Verdin Jr

    November 10, 2025 AT 09:00
    LMAO 😂 so doctors are just using Latin to make us feel dumb?? Classic. I bet they laugh in the break room like, 'Ha! Poor Karen thinks 'dyspnea' means 'bad breath.' Nah, honey, it means you're about to die.' 😭 I'm calling my provider right now. And I'm bringing popcorn.
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    Key Davis

    November 11, 2025 AT 00:35
    The systemic misalignment between clinical documentation and patient comprehension represents a profound ethical deficit in contemporary healthcare delivery. The imperative to standardize for administrative efficiency has, regrettably, superseded the fundamental duty of patient-centered communication. This is not merely a linguistic issue-it is a moral one.
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    Cris Ceceris

    November 11, 2025 AT 22:28
    I wonder… if we stopped treating medical language like a secret club, would we stop treating patients like outsiders? Maybe the problem isn’t that we don’t understand the terms-it’s that we’ve been trained to feel ashamed for not knowing them. What if the real diagnosis was loneliness?
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    Brad Seymour

    November 13, 2025 AT 06:00
    Honestly, this made me tear up a bit. I’m from the UK and we’ve got the same issues here. My mum didn’t understand 'hypertension' for years and thought she had a 'bad heart' because of it. She stopped going to check-ups. It’s not just American. It’s everywhere. But I’m glad someone’s finally saying it out loud.
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    Erika Puhan

    November 13, 2025 AT 18:24
    This is just another example of how lazy healthcare providers are. If you can't speak proper medical terminology, you shouldn't be allowed to read your own records. I mean, if you can't handle 'polyneuropathy,' maybe you shouldn't be managing your own diabetes. It's not the system's fault you're illiterate.
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    Edward Weaver

    November 14, 2025 AT 01:47
    American healthcare is broken because we let people who don’t even know what an ICD code is dictate how doctors write notes. We need to go back to the old days-when doctors were respected, patients shut up, and insurance didn’t control everything. This 'plain language' nonsense is just woke nonsense. Let the professionals do their jobs.
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    Lexi Brinkley

    November 15, 2025 AT 15:32
    I just read my note and it said 'poorly controlled DM' 😭 I thought I was a bad person. Like… was I supposed to be a perfect diabetic? 🤦‍♀️ I cried in the bathroom. Then I screenshot it and sent it to my sister. She said 'tell them to translate it.' So I did. They did. I felt like a human again. 🫶
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    Kelsey Veg

    November 16, 2025 AT 21:44
    i was like wait… what is e11.9? and then i looked it up and it was just type 2 diabities?? why do they make it sound so scary? i mean its not like i have a zombie virus or something 😅
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    Alex Harrison

    November 17, 2025 AT 05:29
    i think the real issue is that doctors are so busy typing on the computer they forget to look up and talk to you. i had one doc who spent 10 min explaining my code and then said 'oh and you should probably cut back on sugar.' i was like... i already knew that. why did you need 10 minutes to say it?
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    Jay Wallace

    November 17, 2025 AT 16:06
    This is just another example of how the system is being dumbed down for the masses. If you can’t understand basic medical terminology, maybe you shouldn’t be in charge of your own health. We don’t translate car manuals for people who don’t know what a carburetor is. Why should we do it for healthcare? It’s not the system’s job to coddle.
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    Alyssa Fisher

    November 18, 2025 AT 18:30
    What if the real problem isn’t the jargon-but the silence around it? We’re taught to be polite. To nod. To say 'yes, I understand.' But no one ever teaches us it’s okay to say, 'I don’t know what that means.' Maybe the most radical act in medicine today isn’t AI translation-it’s simply asking, 'Can you say that again? In words I know?'

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