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

When you walk out of a doctor’s office, you might leave with a prescription, a follow-up appointment, and a chart note that says "Type 2 Diabetes Mellitus, E11.9". But inside your head, you’re thinking: "I’m always tired, I’m drinking water nonstop, and I don’t know why I’m losing weight." These aren’t the same things. And that gap? It’s not just a misunderstanding-it’s a safety risk.

Why the Labels Don’t Match

Healthcare providers use standardized codes to document what’s happening with your body. These are called ICD-10 codes for diagnoses and CPT codes for procedures. There are over 70,000 ICD-10 codes. Each one is precise, designed for billing, research, and tracking disease patterns across populations. But these codes were never meant to be read by patients.

Patients don’t think in codes. They think in symptoms. "My knees hurt when I walk." "I get dizzy after I eat." "I’m always so tired." These aren’t medical terms-they’re lived experiences. And when providers write "hypertension" in the chart, many patients don’t know that means high blood pressure. A 2019 study found 68% of patients misunderstood common medical terms. Nearly half didn’t know what "hypertension" meant. Over 60% didn’t recognize "colitis."

This isn’t about intelligence. It’s about language. Providers are trained to speak in a clinical dialect. Patients speak in the language of their bodies. When those two languages don’t connect, mistakes happen.

The Real Cost of Miscommunication

A patient reads "poorly controlled DM" in their portal and thinks, "I’m a bad diabetic." They feel blamed. They don’t ask questions. They skip refills. A 2022 survey by the American Medical Association found that 57% of patients felt confused by the terms in their medical records. Of those, 32% avoided follow-up care because of it.

Doctors aren’t immune to the problem either. In a 2023 Medscape survey, 64% of physicians said they spent 15 to 30 minutes per visit just explaining terms. That’s a third of a typical 15.7-minute appointment-time that could’ve been used for treatment planning, emotional support, or answering real concerns.

The Institute of Medicine estimated back in 2001 that communication failures contributed to 80% of serious medical errors. That number hasn’t gone down. In fact, with more patients accessing their records through portals like MyChart, the risk is growing. If your chart says "metformin 500mg BID," and you don’t know what "BID" means, you might take it once a day-or twice at once.

Who’s Trying to Fix This?

It’s not just patients and doctors. A whole system is trying to bridge this gap.

Health Information Management (HIM) professionals are the hidden middlemen. They’re the ones who translate clinical notes into coded data for billing, but also ensure those records are accurate and private under HIPAA. They train for over 1,200 hours in medical coding, transcription, and patient communication. Their job? Make sure the system works-for providers, for insurers, and for you.

Some hospitals are taking bold steps. Kaiser Permanente started letting patients read their doctors’ notes back in 2010. They called it OpenNotes. Since then, they’ve seen a 27% drop in patient confusion about diagnoses and a 19% increase in medication adherence. That’s not magic. That’s transparency.

Mayo Clinic built EHR templates that auto-translate clinical jargon. "Myocardial infarction" becomes "heart attack." "Chronic obstructive pulmonary disease" becomes "lung disease from smoking." In their pilot, patient confusion dropped by 38%.

The government is pushing too. The 21st Century Cures Act of 2016 forced providers to give patients full access to their clinical notes by 2021. No more hiding behind legalese. If your doctor wrote "depression with anxiety," you now get to read it-and ask, "What does that mean?"

What’s Changing Now?

The world of medical coding is evolving. The World Health Organization’s ICD-11, rolled out globally in 2022, now includes plain-language descriptions alongside each code. For the first time, a diagnosis code comes with a human-readable explanation.

New tech standards like HL7 FHIR let systems show both the clinical term and the patient-friendly version at the same time. So a provider sees "E11.9" while you see "Type 2 Diabetes." Same data. Different language.

And AI is stepping in. Google’s Med-PaLM 2, released in 2023, can convert clinical notes into plain language with 72% accuracy. It’s not perfect yet-clinical systems need 95% accuracy to be trusted-but it’s a start.

The American Medical Informatics Association predicts that by 2027, 60% of electronic health records will have real-time translation built in. That means your doctor types "hyperlipidemia," and your phone shows "high cholesterol." No translation needed.

What You Can Do Right Now

You don’t have to wait for technology to fix this. You can start today.

• Ask: "Can you say that in plain language?" No shame in it. Providers expect it.
• Use the "teach-back" method: After your doctor explains something, say, "So, just to make sure I got it-you’re saying I need to take this pill twice a day with food because it helps lower my sugar?" If you can repeat it back, you understand it.
• Read your records. If something doesn’t make sense, write it down. Bring it to your next visit.
• Don’t Google symptoms without context. Medical terms can scare you. "Ataxia" sounds like a disease. It’s just trouble with balance.
• Ask for a printed summary. Many clinics now offer one after visits. It’s not a bill-it’s a summary of what was discussed.

What Providers Need to Do

Providers aren’t the enemy. Most want to communicate better. But the system doesn’t make it easy.

• Use plain language in notes-even if the system forces you to code something as "E11.9," write "Type 2 Diabetes" in the clinical narrative.
• Don’t assume patients know what "BID" or "PRN" means. Spell it out: "twice a day" or "as needed."
• Use visual aids. A picture of a pill bottle with "take with breakfast" written on it sticks better than a prescription label.
• Normalize asking: "What’s your biggest worry about this condition?" That opens the door to real conversation.

The Bigger Picture

This isn’t just about words. It’s about power. For decades, medical records were locked away-written in a language only insiders understood. That kept control in the hands of providers. But now, patients have access. And they’re using it.

The shift from provider-centered care to patient-centered care isn’t just a buzzword. It’s a legal requirement, a reimbursement incentive, and a moral imperative. CMS now ties 2% of hospital payments to how well patients say they understood their care. That’s not small change. That’s real pressure to improve.

The goal isn’t to eliminate medical terminology. It’s to make sure patients aren’t left behind by it. Medicine needs codes for research, billing, and safety. But it also needs clarity for healing.

Final Thought

Your body speaks in symptoms. Your provider speaks in codes. The best care happens when those two voices are heard equally. You don’t need a medical degree to understand your health. You just need someone willing to translate.