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What is health literacy and why does it matter? Insights from health literacy expert Becca Freed

In order to make informed healthcare decisions, patients and caregivers need to be able to understand medical information. This is often complex, and, as highlighted by the COVID-19 pandemic, can also be contradictory and evolve rapidly. As medical communications professionals, we aim to ensure that we are providing our readers with appropriately written, understandable information. The Publication Plan spoke to Becca Freed, Associate Director, Health Literacy Communications at Health Research for Action, to find out how this goal can be achieved.

Could you tell us a bit about Health Research for Action and how you came to be involved in health literacy?

“Health Research for Action (HRA) is a research centre within the School of Public Health at the University of California, Berkeley. For more than 25 years, the researchers and communications professionals at HRA have conducted participatory research on health disparities, and designed interventions aimed at reducing those disparities. Often those interventions are patient education products.

I’m a content strategist and the lead writer for HRA. After quite a few years of writing and editing in the tech field, I moved into the healthcare space because it allows me to use my communications skills to advocate for patients. When I evaluate or develop communications with a health literacy lens, I represent the voice of the patient.”

When I evaluate or develop communications with a health literacy lens, I represent the voice of the patient.

Health literacy and health equity are often discussed together. How would you define these terms and how are the two interlinked?

“Health literacy is somewhat different for individuals, healthcare providers, and institutions. For individuals, it is the ability to access, understand, and use health information to support their own (or their loved ones’) health. At HRA, we lean into the idea that helping people to be health literate helps them act as their own advocates in a healthcare encounter.

For healthcare providers, health literacy means being aware of how they can help patients be health literate. A key part of this is giving patients information that is usable and accessible: that is, the right amount of information, at the right time, at the appropriate level of complexity. Doing this well requires empathy – the ability to put oneself in the patient’s shoes.

For healthcare providers, health literacy means being aware of how they can help patients be health literate. A key part of this is giving patients information that is usable and accessible.

For institutions, health literacy is providing equal, easy, and shame-free access to (and delivery of) healthcare and health information. This requires examining the organisation for ways that the environment or interactions could hinder patients from getting what they need—and working to remove those obstacles.

Health equity is a broader concept that analyses how aspects of people’s lives (social determinants such as race, education, quality of housing, environmental health hazards, access to food, and access to healthcare) affect their health. Health equity initiatives aim to lower or remove those population-level barriers to good health, so that everyone can have the best health possible for them.

Promoting health literacy among individuals, healthcare providers, and institutions is a key factor in advancing health equity.”

Promoting health literacy among individuals, healthcare providers, and institutions is a key factor in advancing health equity.

Can you tell us about the challenges faced by those with limited health literacy skills? How important are clear medical communications in empowering patients to make informed healthcare decisions?

“Low health literacy can make many aspects of healthcare and self-care difficult. It may mean difficulty reading and following instructions for taking medication, or difficulty understanding what lab results mean. It can mean feeling intimidated in the doctor’s office or embarrassed to ask for a more detailed explanation of a procedure or instructions.

Clear, non-shaming healthcare communications anticipate the questions that patients are likely to have about a condition, procedure, or medication. Good healthcare communications also encourage patients to ask questions and take an active role in their care.

Good healthcare communications also encourage patients to ask questions and take an active role in their care.

This can be done by incorporating interactive elements such as questionnaires or checklists into the communication. In a clinical encounter, it can include techniques like teach-back, where a practitioner asks a patient to repeat information back, in order to identify and correct misunderstandings.”

In your experience, how has the COVID-19 pandemic impacted perceptions about the importance of health literacy?

“COVID-19 has created a much wider awareness of health literacy issues (if not health literacy as a discipline), because now everyone, worldwide, needs to understand complex and rapidly changing information. We all want timely, reliable, and understandable information about how to keep ourselves, our families, and our communities safe.

COVID-19 has created a much wider awareness of health literacy issues… because now everyone, worldwide, needs to understand complex and rapidly changing information.

We rely on government agencies and news outlets to translate bioscience research into understandable, actionable advice. Unfortunately, authoritative and accurate information is fighting with misinformation for mindshare, and often losing. This problem is exacerbated by the fact that the virus has mutated, and the infection-control advice has also had to evolve. Ideally, health communications are both clear and consistent. We’ve had a hard time maintaining consistency, which has probably undermined the credibility of communications that might otherwise be trusted.”

Can you give us some tips on how to make complex information clear and understandable for an audience without being condescending or patronising?

“Everyone benefits from information that is accessible and actionable, regardless of their reading skill. It’s not patronising to use health literacy best practices to present content. These practices include:

  • defining scientific and technical terms when it is necessary to use them
  • organising content in coherent, logical ways, so that new or more complex information builds on familiar or simpler information
  • making content easy to navigate by providing adequate ‘signposts’ in the form of relevant headers
  • providing captions or labels for images
  • ensuring that the design includes enough white space to allow scanning of the content and some visual ‘breaks.’”

How useful are online reading level tests and tools? What other aspects do you consider when assessing the readability and usability of medical communications?

“Reading-level tests and tools are nothing more than algorithms that count syllables per word and words per sentence. They can’t determine whether a short word is unfamiliar or a long word is commonly known. At best, they offer an approximation of the reading skill needed to understand your text. In addition, it’s important to select and clean text samples appropriately to get accurate results from readability tests. At HRA, we think of reading-level tests as a very blunt instrument that address just one factor in assessing the readability of a communication product.

At HRA, we use the Suitability Assessment of Materials (SAM) to evaluate the health literacy of text-based health communications. It evaluates printed materials on 22 criteria in 6 broad categories:

  • content
  • literacy
  • graphics
  • layout and typography
  • learning and motivation
  • cultural appropriateness.

The SAM was developed by Len and Cecilia Doak and it is widely recognised and used. The SAM is described in detail in Doak, Doak & Root’s Teaching Patients with Low Literacy Skills, Second Edition, J.B. Lippincott Company, 1996.”

How important is it to consider cultural differences within audiences? Could you give us some examples of how materials may need to be adapted to ensure cultural appropriateness?

“The more you can tailor materials to the cultural preferences of an audience, the better. It’s ideal to write a product specifically for an audience with defined demographics. This is where HRA’s participatory approach can be especially helpful, because the most useful and trusted solutions are those designed by the affected community. Involve the audience that you want to reach, and let them contribute meaningfully to designing the material.

Involve the audience that you want to reach, and let them contribute meaningfully to designing the material.

When your material must be written for a general audience, strive for inclusivity. Think about everyone who could be using it and what might alienate them or make your material hard to use. Then fix that. Usability testing is very helpful for bringing these issues to the surface.

Elements of a communications product may need to be adapted for cultural differences or inclusiveness to ensure that:

  • photos and illustrations are representative and respectful
  • descriptions of cultural practices and food are accurate and respectful
  • behaviour recommendations are realistic (for example, not everyone has access to safe, attractive outdoor spaces for exercising, and not everyone has access to a grocery store full of heathy, affordable whole foods).”

How can alternative formats to traditional written text, such as audio, infographics or digital, be best used to meet the communication needs of diverse users?

The more appealing and easy-to-consume your content is, the more likely it is to reach your audience and be remembered.

“Alternative formats—such as text-messaging campaigns, web content, mobile apps, and graphical content like baby books and comic books—can be very helpful. They allow you to provide content in appealing, digestible formats and through media that the audience is already using. And the more appealing and easy-to-consume your content is, the more likely it is to reach your audience and be remembered. To develop content that will be well received, though, requires that you understand your audience and their preferences very well.

For example, at HRA we have begun including QR codes in some content to allow readers to find more information online. In our usability testing we found that some readers still don’t have cell phones that can read QR codes easily. As a result, we adapted our content, including a URL everywhere that we offered a QR code.”

How important do you consider open access and plain language summaries to be in disseminating information to patients, caregivers and other non-expert groups?

“Plain language summaries are probably most useful to healthcare providers, such as general practitioners, and patient advocacy organisations and advocates. Plain language summaries may help these constituencies translate research into content that more general-interest audiences can understand. The contexts in which plain language summaries appear—research papers and conference posters—make them inaccessible and intimidating to lay audiences. Plain-language summaries require more ‘translation’ with information design and plain language to become communications products of use to non-experts.”

What more could we (the medical communications industry) do to help patients understand and act upon important medical information?

“Consider that a medical communications product has many stakeholders whose needs must be addressed, and must represent the patients’ interests. Make sure to put yourself in a patient’s shoes, ask what they need from the product, and advocate for their needs. Imagine that you are the patient and then ask yourself, “How does this benefit me?””

Becca Freed is Associate Director, Health Literacy Communications at Health Research for Action. You can contact Becca via beccafreed@berkeley.edu or LinkedIn.

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Does your organisation use tools like the Suitability Assessment of Materials to assess health literacy of your materials?

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