Health Literacy Is Not Just a Patient Responsibility
By Ailene Gerhardt, MA, BCPA, CSA®, Founder, Beacon Patient Solutions LLC& Navigating Solo Network, Host, The Navigating Solo™ Podcast
Every October, Health Literacy Month gives us an opportunity to think about how people find, understand, and use health information.
For years, conversations about health literacy often focused primarily on the individual: Can the patient understand the information being given? Can they follow the instructions? Can they make an informed healthcare decision?
Those questions still matter. But our understanding of health literacy has evolved.
Healthy People 2030 now distinguishes between personal health literacy and organizational health literacy.
Personal health literacy is a person’s ability to find, understand, and use information and services to inform health-related decisions and actions.
Organizational health literacy looks at the other side of that equation: how well organizations enable people to find, understand, and use that information and those services.
That distinction matters.
Because when someone leaves a medical appointment confused about what happens next, struggles to understand a test result, cannot figure out how to schedule a referral, receives contradictory instructions from several specialists, or spends hours trying to navigate a patient portal, the problem should not automatically be framed as a deficiency in the patient.
Sometimes the system is simply difficult to navigate.
Health literacy changes with the situation
Health literacy is not a fixed characteristic that someone either has or does not have.
A person who is highly educated, comfortable researching information, and normally confident making decisions can find it much harder to process information when they are sick, frightened, exhausted, in pain, facing an unfamiliar diagnosis, or trying to make a decision quickly.
Even people who are comfortable reading, working with numbers, and asking questions may have difficulty when they encounter unfamiliar medical language, complex choices, or information that carries an emotional weight.
Clear communication benefits everyone. Understanding is only part of the challenge. Health literacy is about more than being able to read a brochure or understand medical terminology.
Patients are routinely expected to:
understand insurance and billing information;
use online portals and digital health tools;
complete advance care planning documents;
identify who can speak for them if they cannot speak for themselves; and
understand what they are responsible for doing next.
understand diagnoses and treatment options;
weigh benefits, risks, and alternatives;
interpret test results;
reconcile medication instructions;
know which symptoms require follow-up;
coordinate care among multiple clinicians;
That is a significant amount of work, particularly when someone is navigating a new diagnosis, complex healthcare situation, or unexpected change in health.
For people who do not have a reliable support person available to help with healthcare decisions, communication, logistics, or follow-up, those demands can become even more visible.
What healthcare organizations can do
The recognition of organizational health literacy is important because it acknowledges that healthcare professionals and organizations share responsibility for making healthcare understandable and usable.
That means asking questions such as:
Is our information written in plain language?
Do patients understand what they are supposed to do after they leave?
Are instructions consistent across departments and clinicians?
Can someone actually find the service or resource we told them to use?
Does our patient portal make information easier to access, or does it create another barrier?
Are we relying on another person to fill communication or coordination gaps without ever asking whether that support is actually available?
That last question is especially important.
Healthcare systems frequently operate with an implicit assumption that someone else will be available to help — a spouse, adult child, relative, friend, or other support person — to interpret information, manage logistics, remember instructions, provide transportation, or follow up after care.
For some patients, that support is available. For others, it is limited, unavailable, or simply not part of their circumstances.
Healthcare systems should be designed to work for all of them.
What patients can do
It can be difficult to formulate questions in the moment, particularly when the information is unexpected, emotional, or complex.
Patients should never be embarrassed to ask for information differently, to ask that something be repeated, or to say that they are not yet clear about what happens next.
Some simple questions can make a substantial difference:
Can you explain that in another way?
What are my options?
What are the benefits and risks of each option?
What happens if I decide not to do this?
What do I need to do when I get home?
What symptoms should prompt me to call you?
Who should I contact if I have questions?
Can you give me those instructions in writing?
And one of my favorites: Before I leave, can we make sure I understand what happens next?
Healthcare is complicated. Asking questions is not evidence that someone has failed to understand the system. It is one of the ways patients can actively participate in their care.
Health literacy is a shared responsibility
One of the most important changes in the health literacy conversation is the recognition that responsibility does not rest solely with the person receiving care.
We should continue helping people strengthen their ability to understand and navigate healthcare.
But we should also keep asking why healthcare can be so difficult to understand and navigate in the first place.
Health literacy should not mean teaching patients how to become exceptionally skilled at overcoming unnecessarily complicated systems.
It should mean creating healthcare information, communication, and systems that people can actually use.
This Health Literacy Month, that is a responsibility all of us who work in healthcare should be willing to share.
As an independent Board-Certified Patient Advocate, much of my work involves helping individuals and families understand healthcare information, prepare questions, evaluate options, communicate with clinicians, and determine what needs to happen next.
Learn more about independent healthcare advocacy by exploring the Beacon Patient Solutions website.
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When the complexities of the situation are too challenging to navigate on your own working with an independent board certified patient advocate can help cut through the “red tape” and reduce complications at an emotional time. Contact me to learn more about the value of working with a private patient advocate.