Understanding Medical Information Is Harder Than Most Realize

“You don’t know what you don’t know.” It might be a tired adage, but it readily applies to navigating the medical world. Certainly, you need to understand health information for the best chance of a good outcome. But understanding medical information is harder than most realize.

Understanding medical information requires health literacy – the ability to understand health information. The Institute of Medicine defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”.

Most patients struggle to understand medical information.

Low health literacy is a hidden epidemic, impacting nearly 90% of US adults. In other words, most of us have difficulty understanding and using the everyday health information that is routinely available in healthcare facilities and other sources. For instance, doctors frequently use medical jargon, even though they know patients may find it confusing. Of course, some information is harder to understand than others.

Yet many of us assume we understand what we hear and read, even when we don’t. And that can be dangerous to our health.

How confused are patients and family caregivers?

Patients and family caregivers often do not fully grasp the medical information they hear or read, but unfortunately they don’t always realize their misconceptions.

For instance, a landmark study found patients and family caregivers often don’t realize they have misunderstood medical information. Researchers interviewed patients and caregivers as they left the emergency department (ED) to discern if they understood 4 important topics: the diagnosis and cause; ED care; post-ED care; and follow-up instructions.

The researchers found that 78% did not adequately understand at least 1 of these 4 subjects. And 51% didn’t understand 2 or more subjects. However, only 20% of those surveyed realized they did not properly understand everything they were told.

The results of this study indicate a false confidence in one’s ability to understand medical information.

Another study shows confusion surrounding medical jargon.

In a 2021-2022 study, researchers evaluated how well adults understood medical jargon – phrases that mean one thing in regular usage but have different meanings in a medical context (such as negative and positive test results).

The ability of the 215 participants to understand medical jargon varied. For example, 96% of participants knew negative cancer screening results meant they did not have cancer. However, only 79% knew the phrase “your tumor is progressing” was bad news. And only 67% understood that positive lymph nodes meant the cancer had spread.

Additionally, while 80% understood that an unremarkable chest radiography was good news, only 21% correctly understood that it’s generally bad news when a doctor says their radiography was impressive.

The findings suggest that commonly used medical phrases can lead to confusion among patients, sometimes leading people to think the opposite of what the provider intended.

Interestingly, in a 2021 AHIMA Foundation survey of American adults, many patients report feeling confused or unsure about the information provided after they leave a medical appointment. For instance, 62% reported they are not “extremely confident” in their understanding of the health information they discuss with their doctor.

Furthermore, 24% reported they don’t understand all the medical information their doctor provides. And 31% stated they can’t remember medical information immediately following an appointment. Given these findings, it’s not surprising that 15% reported they sometimes feel more confused about their health after an appointment than they did before their visit.

Although these two studies approached the issue from different angles, the results are the same — a large portion of Americans struggle to understand medical information!

Patients want help understanding their health condition.

In a 2022 survey, 96% patients and caregivers reported they would like more information about their health condition. Moreover, 53% stated they would prefer that information come through conversations with their medical team.

How can low health literacy impact you?

Unsurprisingly, struggling to understand and use health information can negatively affect your health status, outcome, and medical costs. Navigating the health care system requires patients (and family caregivers) to understand complex written and spoken information, which can be difficult or even impossible.

If you can’t understand needed information, you may struggle to take the actions required for your health, and/or make appropriate health decisions.

Importantly, research shows that effective patient-doctor communication is linked to higher patient and doctor satisfaction, better adherence to treatment plans, more appropriate medical decisions, and better health outcomes. Certainly, a solid understanding of medical information makes it easier to have effective communication with your doctors.

The American Medical Association (AMA) Foundation’s report on health literacy outlines some of the physical, emotional and economic harms of low health literacy, as follows:

Physical harm.

Not properly following doctor’s recommendations can cause physical harm. For instance, potentially harmful actions that can result from low health literacy include:

• Not filling or refilling a prescription.
• Taking the wrong dose of a medication.
• Taking a medication at the wrong time.
• Not recognizing the effects of inappropriate dosing, side effects or drug interactions.
• Failing to take appropriate actions for evaluation, treatment, or follow-up.

Two examples of the health impact of low health literacy.

Health literacy and heart failure patients.

In 2020, Mayo Clinic published the results of a study of patients with heart failure. Health literacy is critical for heart failure patients because these patients must closely follow an extensive list of self-care tasks.

And these tasks require a certain level of health literacy to properly understand why and how to take needed steps. For instance, these patients must regularly monitor their weight, blood pressure, and blood sugar levels.

Importantly, researchers found an increased risk of hospitalization and death for patients with low health literacy.

Health literacy impact on postoperative infections.

Another study published in 2020 found that surgical patients with low health literacy were more likely to experience a postoperative infection.

Researchers followed 270 patients after colon and rectal operations. They found the “odds of having an infectious complication within a month after the operation were 4.5 times higher in patients with low health literacy compared with patients whose health literacy was adequate”.

The infections ranged from minor infections such as superficial wound infections and urinary tract infections to very, very serious infections such as septic shock and deep-space infections inside the belly.

Emotional harm.

Low health literacy can lead to shame, stress, frustration, confusion, worry and poor self-esteem. Moreover, some patients avoid seeking care due to the emotional stress of low health literacy, which clearly impacts both emotional and physical health.

Economic harm.

As patients’ health can suffer from low health literacy, medical-related expenses can rise, including:

• Unnecessary repeat visits, tests, or procedures.
• Unneeded or inappropriate medication regimens.
• The use of higher and perhaps more costly levels of care, such as potentially unneeded ER visits.
• Lost wages and lowered job productivity.
• Increased transportation and childcare costs.

Why is it so hard to understand health information?

There is a lot of information coming at you as you discuss diagnosis, testing and treatment options with your doctors. Patients (and their families) are likely hearing new, often complicated, medical terms.

And the stress of a serious health challenge can make it even harder to understand anything, never mind complicated medical information. On top of that, the way your doctors communicate with you can impact your ability to understand what they discuss with you.

Consider these factors below:

Doctors don’t always provide information that patients can easily understand.

Doctors should, but don’t always, provide patients with easily understandable written and verbal medical information. The good news is that doctors can adjust how they deliver information to help patients better understand. The bad news is that not all doctors make the effort.

Experts suggest that to improve a patient’s understanding of medical information, written materials should:

• Only include plain wording, with no medical jargon.
• Include diagrams and simple pictures as appropriate.
• Use bullet points and short sentences.
• Emphasize what the patient needs to do.
• Not include unnecessary information.

Furthermore, experts suggest that when conveying information verbally, doctors and other medical staff should:

• Encourage open communication with patients, including encouraging patients to ask questions.
• Only communicate key points, avoiding excessive information.
• Speak slowly and avoid medical jargon.
• Use analogies that patients can relate to.
• Read their handouts with the patient, highlighting, and circling important parts.

Doctors don’t always make sure their patients understand the information discussed.

In addition to providing easily understandable information, it’s critical for doctors to make sure their patients understand the information. Doctors should ask patients to repeat back the important elements discussed to ensure patients have a grasp on the information.

If doctors don’t know their patients struggle to understand the information discussed during appointments, it is difficult for them to improve their communication methods. Yet, many doctors assume their patients understand health information better than they actually do.

A study found that doctors were often not aware of a patient’s level of understanding. In the study, which surveyed 43 doctors and 89 patients, 77% of the doctors though their patients “understood their diagnosis at least somewhat well”.

However, when the patients were surveyed, only 57% of the patients understood their diagnosis. Moreover, although only 58% of patients felt their doctors always explained things in an understandable way, 21% of doctors said they always provide “explanations of some kind”.

Doctors don’t always let patients ask questions.

Doctors see numerous patients every day and often don’t have ample time for appointments. However, understanding medical information often relies on the patient asking questions. Therefore, it’s important for doctors to take the time to answer any questions.

But it’s equally important that patients come prepared to appointments, with questions and their “story” written down, to maximize their time with doctors.

Nurses don’t always have the time or knowledge to help.

In a 2022 survey, 68% of nurses stated they feel unable to fully support their patients, with 96% saying they need more time, education, and resources to care for patients and their family caregivers.

Information on healthcare portals can be confusing.

In 2020, nearly 100 million people in the US accessed their health records through a patient portal, looking up doctor notes, test results, and more. However, the widespread use of medical abbreviations and acronyms often make it difficult for patients to understand their own records.

Health literacy has never been more important. 

Health literacy has become even more critical as the demands on patients and family caregivers has increased. According to the AMA Foundation, demands increase as:

• Patients stay in the hospital for less time than in the past.
• The average number of medications prescribed has increased.
• There is an increased prevalence of chronic disease.

These changes have made the medical system “heavily dependent on the ability of patients and their caregivers to discuss concerns, report significant findings and manage their care.” Hence, the importance of clear communication between health care providers and patients has also increased.

How can you improve your understanding of medical information?

There are many steps you can take to improve how well you understand health information. First and foremost, don’t assume you’ve “got it”. And don’t feel ashamed if you don’t understand what you hear or read – health information is often very complicated!

My suggestions to help you better understand medical information:

• When in doubt, ask! If you have a question about a recent appointment or a question about something you read or heard, ask your doctor. You can reach out through your doctor’s portal, or you can call the office and leave a message for your doctor.
• Prepare for appointments – write down your “story” and any questions.
• Whenever possible, bring another adult with you to every appointment. They can help you think of questions, take notes, and help you understand the health information discussed. Two brains are better than one!
• Take detailed, written notes during every appointment. Bring these notes with you to every appointment and share the information with every member of your medical team. For more information, read Why Take Detailed Notes at Doctor Appointments?
• Record your conversations with your doctor (ask him/her first!) so you can listen as often as needed. For more information, read Should You Record Medical Appointments?
• Ask as many questions as you need to understand the information. Don’t be shy about asking a doctor to repeat, or rephrase, information.
• Ask for written materials, including diagrams and drawings when applicable.
• Don’t assume you understand everything – you might not understand as well as you think you do. Before you leave an appointment, summarize what you heard and ask your doctor if your understanding is correct.
• Keep your health information organized and together. Bring it all with you to every appointment and share it with your medical team.
• If needed, don’t be shy about asking for a language interpreter.
• If you have a doctor who doesn’t take the time to make sure you understand the information discussed, it might be time to look for a new doctor. For more information, read When Is It Time To Change Doctors?

ZaggoCare can help!

And order the ZaggoCare System – it can make it easier for you to understand health information. And our organizational tools will help you keep all your medical information organized and at your fingertips.

For more information…

For more information on how to improve your understanding of medical information, read my blog posts:

• 10 Tips for a Better Medical Appointment.
• How Can You Get the Best Healthcare? Actively Participate!
• Can You Trust Medical Information Online?
• Can You Trust Advice from Other Patients?
• 10 Tips to Communicate Better with Doctors.

NOTE: I updated this post on 4-3-23.