Health literacy means your ability to collect and understand your health information so you can make the best decisions for your unique situation.
Only about 12% of adults in the United States have good health literacy, according to the U.S. Department of Health and Human Services.1 This means that about 88% of adults may lack the skills to manage their health and reduce their risk of disease.
Learn more about:
- Why good health literacy is important
- Skills you need for good health literacy
- Factors that affect health literacy
- How to improve your health literacy
- Take Charge of Your Health webinar
- Take a short survey on health literacy
Why good health literacy is important
Health literacy is important for everyone. At some point in your life, you will need to be able to use and understand health information and services.
Your level of health literacy affects your ability to:
- navigate the healthcare system, including finding doctors and services, as well as filling out complicated forms and questionnaires and deciding on insurance plans
- share your personal information with healthcare providers
- do self-care and other at-home procedures
- understand concepts such as risk of recurrence (cancer coming back) and cost-benefit ratios (weighing the risks and benefits of treatments)
- take advantage of preventive health services
Having good health literacy skills allows you to:
- find information about your health conditions and the health services you need
- tell your healthcare providers about your needs and preferences
- answer questions about your health conditions and your needs
- understand the choices you have about treatments, doctors, facilities, services, and other items related to your health condition
- decide which services and options are best for you
- understand and stick to your treatment plan
People who don’t have good health literacy are more likely to:
- say they have poor health
- not have health insurance
- be hospitalized
People who don’t have good health literacy also are less likely to use preventive services such as screening mammograms, Pap smears, and flu shots.
Skills you need for good health literacy
To have good health literacy, you need to have several skills, including:
- Basic math skills: Measuring medicines, understanding nutrition labels, calculating blood sugar levels, and keeping track of insurance copayments and deductibles all require basic math skills such as addition, subtraction, and multiplication.
- Literacy skills: Literacy is your ability to understand information, whether it’s written, spoken, or in another form. A person with low literacy skills may not be able to understand the instructions on a prescription label. People with low literacy skills also may have trouble understanding what their doctor or other healthcare provider tells them.
Still, healthcare information can be complex, and even people with the best literacy skills may have trouble understanding all the information given to them by their doctor.
- Basic health knowledge: This includes understanding how your body works and the causes of diseases such as breast cancer. Without basic health knowledge, people may not understand the link between lifestyle factors, such as smoking cigarettes, and disease outcomes, such as the cancer coming back (recurrence).
Factors that affect health literacy
There are many factors that can affect health literacy. The groups most likely to have low health literacy are:
- older people
- racial and ethnic minorities
- people who didn’t finish high school
- people with low income levels
- non-native English speakers
- people in poor health
Factors that affect a person’s health literacy are:
- access to resources, including technology
- whether or not a person has insurance
Still, it’s important to know that everyone, even people who are highly educated, can have health literacy issues. Especially if:
- they aren’t familiar with medical terms
- their health issue involves a part of the body they don’t understand
- they have to interpret statistics about the risks and benefits of a treatment or procedure
- they’re diagnosed with a serious illness, such as breast cancer, and are emotionally upset, scared, and confused
- they have a health condition that requires complex self-care
How to improve your health literacy
At its most basic level, health literacy involves your ability to understand information about your body and your health. The information usually comes from a doctor or other healthcare provider and may be presented in a number of ways, including:
- as a picture, graphic, or other visual image
- as a video or slide show
- online or through an app
While it’s important for healthcare professionals to speak in plain language, acknowledge cultural differences, and ensure that patients understand health information, there are also steps you can take to improve your health literacy:
- Ask questions. If you don’t understand what your doctor is telling you or only understand part of it, ask questions. Studies show that many patients are embarrassed to ask questions when they’re confused by what a doctor is saying. Don’t be embarrassed! There is no such thing as a dumb question when it comes to your health. Explain to your doctor that you’re having trouble understanding and ask that the information be explained again.
- Repeat what your doctor tells you in your own words. Your doctor may give you a lot of information in a short time. To make sure you understand, it can help to repeat what your doctor said in your own words. You can start by saying, “Let me make sure I understand. You said…” This gives your doctor a chance to clear up anything you’ve misheard or don’t understand.
- Bring a friend or loved one with you to your appointment, if possible. If they can’t come to the appointment in person, ask your doctor if they can join you virtually by phone or a video call. Ask the person to take notes for you, just in case you miss something. If you don’t understand your friend’s notes, make a list of questions to ask your doctor at your next appointment. If your questions are more urgent, such as how to take medicine or how to care for yourself after a procedure, it makes sense to call your doctor’s office right away.
- Ask to work with a patient navigator if one is available. A patient navigator is someone trained to help you navigate the healthcare system and coordinate your care. Besides helping you understand your healthcare, patient navigators also can help you access health services, assess your treatment options, get a referral, find a clinical trial, fill out forms, and apply for financial assistance. In many cases, a patient navigator will have more time to spend with you than your doctor does.
- Keep a running list of questions for your doctor or patient navigator. The list can include terms you don’t understand, questions about research you saw in the news, or side effects that you’re concerned about. You can keep the list on your phone or in a notebook that you bring with you to each appointment.
- Ask for a translator or bring one with you, if needed. If your first language is different than the one spoken where you live, you may not understand complex medical terms or instructions. Ask your doctor’s office if translation services are available. If these services aren’t available, bring someone with you who can translate for you.
- Ask if there are hand-outs or other materials you can use to help you understand. Your doctor’s office is likely to have additional materials to help explain complicated instructions/information. Not everyone learns best by listening to someone talk. Some people learn best by looking at pictures. Other people learn best by reading the information, and still others learn best by watching a video. So ask for the information in the form that will be most useful for you.
Don’t believe everything you read on the internet. There are thousands of medical information websites. Sadly, not all of them are reviewed by experts, and some exist only to spread bad information and sell items that may do more harm than good. The U.S. National Institutes of Health reports that it is becoming more and more difficult for people to separate health information based on scientific research from misleading ads and gimmicks, especially online.
When you search for medical information online, make sure the website is operated by a reputable organization, such as the National Institutes of Health, the American Cancer Society, the American Society of Clinical Oncology, or other independent group. Check to see if the information has been reviewed by a person with expertise in that field. It’s also a good idea to look at a number of different websites to make sure the information is confirmed and supported by different organizations.
Finally, if the point of a website is getting you to buy something, especially something expensive, it’s a good idea to take a step back and see what other groups are saying about the product or service.
Take Charge of Your Health webinar
Breastcancer.org hosted a webinar, Take Charge of Your Health, on February 18, 2021. Watch the recording to learn tools to evaluate cancer studies to determine whether the results are relevant to your situation, find resources to help you, and gain tips for preparing for conversations with your doctor.
- Marisa Weiss, M.D., Breastcancer.org chief medical officer
- Jenni Sheng, M.D., assistant professor of oncology, Johns Hopkins University School of Medicine, and research member of GRASP (Guiding Researchers and Advocated to Scientific Partnerships)
- Jamie DePolo, Breastcancer.org senior editor
Take our survey
After reading this article, we invite you to take a brief survey to let us know what we did well and how we can improve. Your feedback helps us determine the best ways to support and inform people with breast cancer. We appreciate your time.
Written by: Jamie DePolo, senior editor
This content was developed with contributions from the following experts:
Jenni Sheng, M.D., assistant professor of oncology, Johns Hopkins University School of Medicine, and research member of GRASP (Guiding Researchers and Advocated to Scientific Partnerships)
Jessica Schulz, Ph.D., research analyst, Rutgers University
- Cutilli CC and Bennett IM. Understanding the Health Literacy of America Results of the National Assessment of Adult Literacy. Orthopaedic Nursing. 2009. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2668931/
This content made possible in part through generous support from Lilly Oncology.
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