“You don’t know what you don’t know.” It might be a tired adage, but it really 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.
One’s ability to understand health information is formally called “health literacy”. 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 with health literacy.
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. Yet many of us assume we understand what we hear and read. And that might be dangerous to our health.
Of course, some information is harder to understand than others. When our teenage son Zach was diagnosed with a terminal brain tumor, we couldn’t understand most of the information the oncologist provided. Although our doctor patiently explained the various types of cells and tumors in the brain, we understood very little. Then the doctor introduced 3 different clinical trial options, explaining the science behind each trial. Again, we understood little. When asked which trial we wanted for our son, we did what many others do. We asked the doctor which option he would pick if his child had this tumor, and then we chose the one he said he would pick himself.
Patients often don’t understand medical information.
One study found patients and family caregivers often on’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. Furthermore, 51% didn’t understand 2 or more subjects. However, only 20% of those surveyed realized they did not properly understand everything they were told.
Doctors often don’t realize their patients don’t understand medical information.
Another 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, only 58% of patients thought that doctors always explained things in an understandable way, yet 21% of doctors said they always provide “explanations of some kind”.
How does low health literacy impact patients?
Struggling to understand and use health information can negatively affect health status, health outcomes and health 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. When patients can’t understand needed information, they can struggle to take the actions required for their health, and/or make appropriate health decisions.
The American Medical Association (AMA) Foundation’s report on health literacy outlines some of the physical, emotional and economic harms of low health literacy:
Not properly following doctor’s recommendations can cause physical harm. Examples of 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.
- Worsening of health condition.
- Failing to take appropriate actions for evaluation, treatment or follow-up.
Here’s an example of the health impact of low health literacy:
In 2020, Mayo Clinic published the results of a study of patients with heart failure. Researchers found an increased risk of hospitalization and death for patients with low health literacy. Why is health literacy so important for heart failure patients? These patients must closely follow an extensive list of self-care tasks, which requires 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.
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.
As patients’ health can suffer from low health literacy, medical-related expenses can rise, including:
- 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.
The impact of health literacy on patient-doctor communication.
Moreover, 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. Clearly, understanding medical information is critical for effective patient-doctor communication. But effective communication between the patient and doctor is easier said than done.
The impact of the changing medical landscape.
Health literacy has never been more important. As you may know firsthand, patients and families have become increasingly responsible for managing their health and performing tasks that were once only performed by nursing staff. For instance, at our home during the last weeks of our son’s life, we were overwhelmed by the number and complexity of tasks required to keep him alive. We gave him 4 injections each day, fed him through a nasogastric feeding tube, monitored and adjusted his oxygen levels, gave him over 20 medications every day, used a machine to pull fluid out of his lungs, took care of bed sores, and more.
Why have demands on patients and families 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.
Patients and families must convey information to all medical team members.
The current medical environment requires patients to be “captains of their ships”, coordinating their care among multiple medical professionals. Why? First of all, the demanding schedules of doctors leaves them little time to discuss mutual patients with other doctors. And, the various electronic health records often do not communicate with each other. Therefore, patients (and their family caregivers) remain the only constant among the medical team. Thus, it is imperative that patients accurately share information with all members of the medical team. Why? Even one seemingly small misunderstanding can stay on the patient’s records for years and may lead to a medical error and/or patient harm.
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 medical terms that are new and often complicated. And the stress of a serious health challenge can make it even harder to understand anything, never mind complicated medical information.
Doctors don’t always provide information that patients can easily understand.
Since many patients struggle to understand health information, doctors should, but don’t always, provide patients with medical information they can easily understand. However, doctors can adjust how they deliver information to help patients better understand.
Experts suggest that to maximize understanding, 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 should make sure 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. Don’t be insulted if your doctor asks you to relay the key elements. On the contrary, you should feel relieved that your doctor wants to make sure you understand all the important information related to your health.
Doctors should let you ask questions.
Doctors see numerous patients every day and often don’t have ample time for appointments. However, a patient’s ability to understand health 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.
How can you improve your health literacy?
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 material is often very complicated!
- When in doubt, ask! If you have a question about a recent appointment or a question about something you read or heard about, ask your doctor. It’s easy to do if you doctor accepts questions through a portal or via email. However, if need be, call the office and leave a message with 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.
- Keep your health information organized and together. Bring it with you to every appointment and share it with your medical team.
- Record your conversations with your doctor (ask him/her first!) so you can listen as often as needed.
- 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.
- If needed, don’t be shy about asking for a language interpreter.
For more information…
Read my blog posts to learn more:
- 10 Tips for a Better Medical Appointment
- Why Take Detailed Notes at Doctor Appointments?
- Should You Record Conversations with Your Doctors During Your Medical Appointments?
- How Can You Get the Best Healthcare? Actively Participate!
- Trustworthy Sources for Medical Information on the Internet
- Can You Trust Advice from Other Patients?
- 10 Tips to Communicate Better with Doctors
NOTE: I updated this post on 6-5-20.