Health Literacy Month: How to Talk to Patients about Medical Research

October is Health Literacy Month. Health literacy refers to how well patients are able to process and understand basic health information. For example, patients with low health literacy may struggle to understand the writing on a medication bottle or directions from their doctor.

In the United States, nearly 36% of adults have low health literacy. Compared with those with proficient health literacy, those with low health literacy have 6% more hospital visits and 4 times higher health care costs.

Health literacy also impacts the likelihood that a patient will take part in clinical research. A 2017 CISCRP survey first asked patients how well they understand what is meant by the term "clinical research study," also known as "clinical trial." Those who reported that they understood the term "very well" or "somewhat well" also reported more positive perceptions of clinical research in general.

Low health literacy affects all racial groups, though African American and Hispanic patients report lower levels of health literacy. Minority participants are also under-represented in clinical trials. And messaging matters: for African American patients, lack of information is actually a larger factor than lack of trust when it comes to the decision to join a trial.

Whether you work with patients at a research site or as a patient advocate, health literacy is critical to keep in mind when communicating information about clinical research. The below guidelines can help improve your communication with patients and help them make an informed decision that’s right for them about your trial opportunities.

Known the signs of low health literacy.

The Center for Health Care Strategies (CHCS) outlined a few ways that healthcare professionals can recognize if a patient is struggling with low health literacy. Signs include:

  • Being unable to give coherent, sequential medical history
  • Repeatedly using statements and phrases such as "I forgot my reading glasses" or "I'll read this when I get home" when given reading materials
  • Being unable to name medications or explain their purpose or dosing

If you notice these signs when talking with a patient at your site, be aware that some patients may experience shame around the issue and may not be open about asking clarifying questions. Keep your conversation open and ask open-ended questions to help patients feel more comfortable.

Health literacy is also important to the informed consent process when a patient joins a clinical trial. Unfortunately, several studies have shown that the reading level on consent forms is often higher than what the average American can comfortably read. It's particularly important to watch for low health literacy signs while reviewing informed consent. Consider asking patients to recount back their understanding of the trial to help ensure their understanding.

Simplify and clarify your language.

The average American reads at a 5th grade level, but most healthcare materials are written at a 10th-grade reading level. When putting together patient recruitment materials and information on your trial to be shared at your site, run your copy through tools like Hemingway App or Readable to determine your reading level. Readability apps also give writers tips on improving copy by using simpler words and sentence structure.

As you create patient materials, it’s also important to research how patients talk about their own condition. For example, most patients don’t refer to diabetes as "diabetes mellitus," though it may be listed that way in medical literature.

Download our new report on the state of diversity in clinical research.

CHCS shared a list of common terms that can be switched out for easier-to-understand options, which includes a few terms relevant to clinical research:

  • Instead of "eligible," say "Qualified, or able to take part"
  • Instead of "hypertension," say "High blood pressure"
  • Instead of "pulmonary," say "related to breathing."

In our patient recruitment work, we've also identified a few commonly-used terms that be difficult for patients to understand.

At Antidote, we've worked to make clinical trial searches more accessible for patients. In our search tool, we've taken complex eligibility criteria and translated it into patient-friendly language that allows those interested in trials to quickly find matching studies by answering a few questions.

You may also use graphic design to help communicate messages related to clinical research. For example, Antidote created an infographic that explains the drug development process and how the different phases of a clinical trial work.

Consider ways to simplify oral communication, too.

It's important for patients who are considering joining a clinical trial to be able to ask questions about taking part and about the goals of the trial. Those with low health literacy may struggle to understand detailed descriptions of medication dosing and medical procedures that will be part of the trial. At your site, consider engaging patients with graphics and videos to help explain the process.

CHCS also recommends asking open-ended questions to help patients feel more comfortable engaging in a discussion. Getting to know patients on a personal level and understanding their motivations for considering your trial can also help facilitate a better conversation.

This October, think about how you can improve communication with patients about medical research, and spread the word about the importance of understanding health literacy.