A cancer diagnosis brings a wave of new medical terminology, complex treatment plans, and frequent appointments. How you access, understand, and use health information can directly impact your treatment experience, quality of life, and confidence in making health decisions.
What is health literacy?
Health literacy is the combination of skills and resources you use to gather, process, and apply health information to make informed decisions about your care. It goes beyond basic reading or writing. Health literacy involves understanding drug dosages, interpreting lab results, communicating effectively with your oncology team, and making treatment choices that align with your personal values.
Myths on health literacy
There are some misconceptions about health literacy. To better understand it, helps to look at what it is not :
It is NOT general intelligence: A person can have advanced university degrees or decades of professional experience and still struggle to understand complex cancer terminology or medical statistics.
It is NOT just disease knowledge: Memorizing medical facts or the name of a specific diagnosis does not mean someone has the functional skills to navigate health insurance, schedule complex care visits, or manage side effects safely at home.
It is NOT a static trait: Health literacy is not a permanent label. It can change depending on your stress levels, emotional state, physical fatigue, or the complexity of the medical system you are dealing with.
It is NOT a patient's fault: Struggling to understand care plans is rarely a lack of effort by the patient; it is often caused by healthcare systems using over-complicated forms, medical jargon, or rushed appointments.
Anyone can build health literacy, and it is important to remember that you don’t have to know everything at once. You can start, learn at your own pace, and stop if things get too overwhelming.
Reducing health literacy barriers can help improve patient outcomes
A systematic analysis of 4,441 records shows that lower health literacy can make a cancer journey more overwhelming. Think of it as trying to speak a new language from one day to another.
Health literacy can be built over time and with the help of your care team, by asking all the questions you have, finding information from reliable sources, and building a trusting community, this process can become less overwhelming.
Having more support when processing complex medical information or feeling hesitant to ask questions, it can prevent several challenges, such as:
Unmet information needs, such as interpreting routine test results, understanding what risk status means, or completing complex consent forms.
Feeling unprepared for treatment side effects or experiencing a higher fear of disease progression.
People who feel less informed often report lower physical and emotional well-being
Unintended hospital stays, emergency department visits, or unexpected treatment complications.
Developing stronger health literacy skills can help you feel more empowered, take an active role in shared decision-making with your doctors, and be more consistent with your medications. All of this can result in a better overall experience during your care.
How to improve your health literacy?
You do not need a medical background to take charge of your health information. Here are practical steps you, your family, and your caregivers can take:
Ask for clarification: Medical team members often use technical jargon. If a doctor or nurse uses a word you do not recognize, ask them to explain it in plain language.
Use the "teach-back" method: After receiving instructions about a new medication or treatment plan, summarize what you heard back to your healthcare team in your own words to ensure you have the correct information.
Bring a loved one to appointments: Having a family member or caregiver take notes allows you to focus on the conversation and provides a second set of ears to process details when things feel too overwhelming.
Prepare some questions in advance: Write down your questions before every appointment so you make the most of your time with your care team.
Seek reliable educational resources: Avoid random online searches or questions to artificial intelligence chatbots, this can cause unnecessary fear or provide information that is not applicable to your specific case. Stick to verified, patient-centered organizations for your education.
How HealthTree helps you become a better self-advocate
Building health literacy is easier when you have the right tools and a supportive community. The HealthTree Foundation offers free, comprehensive programs designed to guide cancer patients and caregivers at every step:
HealthTree University: A free, comprehensive online video library featuring leading cancer experts who explain complex diagnoses, staging, side effect management, and treatment options in simple, bite-sized lessons.
Expert Community Webinars: Live, interactive sessions where patients and caregivers can learn directly from top oncologists, researchers, and specialists, complete with Q&A sections in every event.
HealthTree Personal Health Record: A secure personal health record connects you to a global community of patients, allows you to explore clinical trials, and helps you discover personalized treatment options based on real-world data.
You can create an account and talk to one of our patient navigators. We are here to answer your questions or help you find reliable resources.
Create your personal health record
Managing medical records, lab results, and treatment history across multiple clinics can feel overwhelming. HealthTree offers a secure, free Personal Health Record (PHR) tool that brings all your medical data together in one place.
By creating your free account, you can:
Keep track of your health: Keep your lab trends, genetics, and treatment history organized and accessible anywhere.
Prepare for doctor appointments: Use your organized health data to have more productive, informed conversations with your care team.
Contribute to research: Anonymously share your health data to help researchers find better treatments and cures.
Source:
