What Is Health Literacy?

October is National Health Literacy Month! Do you know what health literacy is and why it’s an important part of staying healthy?  

Lurie Children’s prides itself on being a reliable source of information on your child’s health and well-being — and the Sarah and Peer Pedersen Family Learning Center (PFLC) supports that mission. Our Patient and Family Education Team at the PFLC wants to celebrate Health Literacy Month by learning more about it and how we can ensure we understand our own health information.   

What is health literacy?  

According to Healthy People 2030, there are two sides of health literacy:  

1. Personal health literacy: Can you “find, understand, and use information and services” to help you make decisions related to your health and healthcare? 
2. Organizational health literacy: Can an organization fairly help people “find, understand, and use information and services” to help them make decisions related to their health and healthcare? 

Having the correct health literacy levels ultimately helps us to better understand information and services related to healthcare – like handouts about managing your diabetes or where to go for an MRI. When we understand this information, we can make the best decisions about our health and care, or the health of our loved ones. In order to find, understand, and use health information and/or services, it needs to be given to us in a way that makes sense.  

Why is it important?  

We can all agree that health information can be complicated and hard to understand sometimes! If we don’t understand it, then how can we use it safely… or at all?  Understanding health information and how we can access different health services can help us and our loved ones live healthier lives.  

One example is how we write about different health topics. Do you think it’s clear that the term “myocarditis” is an issue with your heart? Or that “ischemia” (is-key-me-ah) is damage that’s done when a body part doesn’t get enough blood? If we don’t know what a word or phrase means, then it’s harder for us to care for ourselves appropriately and safely. If someone has low or limited health literacy, this means they may not understand health information given to them and/or may not know how to navigate the healthcare system.  

Is health literacy the same as other types of literacy? 

Not quite – they are similar, but not the same. When we talk about literacy in general, we’re usually thinking of fundamental literacy. These are the skills needed to read, write, and speak our thoughts. Health literacy is the ability to read, write, and talk about health topics, specifically. 

I think I read and write well, so that must mean I have high health literacy too, right? 

Not necessarily. Anyone can have limited health literacy! Even someone who has high fundamental literacy could have low or limited health literacy.  

Remember, these clinical words can be complicated and unfamiliar making them difficult to understand sometimes. In addition, it’s typical for your emotions to also get in the way of processing what you’re being told – especially when you have strong emotions like being scared, upset, angry, etc. Because of these two things, even someone with high functional literacy can still experience low heath literacy and need extra support.  

I think I may have limited health literacy – what can I do?  

Anyone – regardless of your health literacy level – should speak up when they don’t understand health information. It may feel intimidating, but you’ll find that most people are happy to help you. If you feel you need help, try some of the following:  

• Ask questions. If someone gives you information that you don’t understand, don’t be afraid to ask questions. Depending on the question, you don’t need to wait to ask a doctor or nurse. Front desk staff, your pharmacist, your insurance company, etc. can all help you better understand health information. If anyone gives you information that you don’t understand, you could say: “I’m not sure what this word means” or “I don’t understand what I need to do next.”
• Ask your doctor or healthcare team for resources. An internet search can give you thousands of websites on any given topic. The most important thing to remember is that not all of these websites are accurate! It’s crucial that you get your health information from trustworthy organizations or websites. Lurie Children’s has a lot of information on our website that you can look through. Your healthcare team may also have a list of other resources that you can trust to give you accurate information about your health.
• Repeat the information. A great way to make sure you understand the information you were given is by asking if you could repeat it back but using your own words. After someone has explained something to you (perhaps it’s what a diagnosis means or how to take your medication), you may say something like, “I want to make sure I understand this…” and then explain what you just heard them say using your own words. One example may be if your doctor or pharmacist tells you to take your medication twice a day, you could say: “So I should take this once with breakfast and once with lunch?” This gives your doctor or pharmacist a chance to add any important information or clarify their instructions.
• Take notes. Don’t be afraid to bring a notebook and pen or pencil with you to your appointments. If you forget, and want to write something down, ask your doctor or nurse if they have paper and a pen for you to take notes. If you keep a notebook with your health notes in it, consider also using it to write down questions while you’re at home to bring to your next doctor’s appointment. (Of course, if it’s an urgent question, you can always call us).
• Bring someone to your appointment. Having a trusted friend or family member with you can be helpful. They can take notes for you, or they may come up with questions you didn’t think to ask. If anything, they can be another set of ears listening and helping you remember this important information.   

How does Lurie Children’s help our patients? 

At Ann & Robert H. Lurie Children’s Hospital of Chicago, we want to make sure you and your family understand your health information. In addition to having a patient and family education team that works with our clinical teams to create the handouts and booklets you may take home with you; we also have many others who are here to help you navigate you or your child’s diagnosis and treatment. In addition to our doctors, nurses, and specialists, these teams include:  

• Child Life Specialists: They support patients, parents, and siblings by helping them better understand the illness or condition in an age-appropriate way. They also offer therapeutic play, educational resources, and more. 
• Interpreters: They work with families and our clinical teams to help make sure patients and families understand the health information we are giving them. We have both in-person and phone-based services.   
• Social Workers: They connect families with community and hospital resources, help families understand how their child’s diagnosis can affect the entire family, and more.  

If you ever have any questions about your diagnosis, care, treatment, or about navigating the healthcare system – please don’t hesitate to ask us! If you or your child is currently a patient, you can ask anyone you meet on the healthcare team or send us a non-urgent message on MyChart. If you are not currently a patient, but would like to be, you can make an appointment and we’d be happy to help you.  

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