Category: We Heart Health Literacy

As you know, dear readers, communicating about treatment options to patients who are sick and scared is a big health literacy challenge. And what’s even harder? Communicating about medical care when every treatment is likely to cause more harm than good.

That is the tough — and important — subject of Being Mortal: Medicine and What Matters in the End by Atul Gawande.

The book is partly a history of care and treatment of older adults in the United States, and partly a rallying cry for doctors, patients, and family members to have honest conversations about what’s most important to someone with a terminal illness.

Gawande, a surgeon himself, asks: “When should we try to fix and when should we not?” To help people make the best decision, he lists a series of questions that get at both the patient’s understanding of the situation and what makes their unique life worth living.

We won’t spoil the ending by listing the questions here. For the full context, we definitely recommend reading the book, in which Gawande combines facts and data with compelling personal stories — including his own father’s death from cancer.

Of course, the conversations Gawande advocates for are hard. Few people want to talk about the inevitable, but Being Mortal offers both a reason and a way to do it. Because, as Gawande says: “Death, of course, is not a failure. Death is normal.”

The bottom line: Being Mortal explores options for making illness and death less harrowing — and more meaningful.

We know you’ve been there: you’re trying to find a specific piece of information on a website. You navigate to where you expect it to be — it’s not there. You find somewhere else it might fit, even if it’s a stretch — nothing. You can’t find it with the search function. You have failed, and you think, “I’m an intelligent, fairly tech-savvy human. Why can’t I find what I need?!”

It’s scenarios like this, dear readers, that keep us up at night. (No, really. It’s true.) And that’s why, in our latest installment on testing techniques, we’re focusing on usability testing.

When you’re creating a communication product, it’s important not to make any assumptions. Usability testing helps you get past assumptions and find out how easy (or hard) it is to use your website, tool, or print material.

By having real-life users give it a whirl, usability testing gives you invaluable feedback on your product’s navigation, labels, content, and design — feedback you can use to improve your product. And that, dear readers, means your target audience gets a product they can really understand and use.

Now, really. Who doesn’t ❤︎ that?

Keep these tried-and-true tips in mind when you do usability testing:

• Pick a few key tasks for participants to try. For example, can they find the schedule of first aid classes and sign up for a class?
• See what people do on their own. Include time for some unguided, free exploration where participants just click on what interests them. Ask them to “think out loud” as they go.
• Test in person when you can. It’s helpful to see participants’ reactions and non-verbal behavior as they’re interacting with your product. And it’s easier from a logistical standpoint, too! (You can also test remotely with an online screen-sharing platform when necessary.)
• Always test with people from your target audience. After all, who needs to know how to use your product?
• Consider recruiting folks who may have low literacy levels. Working with populations who may have limited literacy skills can help you make sure that your product is easy to use for everyone.
• Test digital products on various devices — desktop, laptop, tablet, mobile, and beyond! You can even test on multiple devices with each participant, so they can interact with your product across platforms (and so you get more feedback).

And don’t worry — usability testing doesn’t have to break the bank. Also, be sure to check out Steve Krug’s book Rocket Surgery Made Easy for more usability testing ideas.

The bottom line: Usability testing gives you super valuable feedback on how your product works (or doesn’t work) for your target audience.

In online health content, images aren’t just pretty pictures — they’re used to support and reinforce your message. (If that’s not the case, Houston, we have a problem!) So it’s important that your image content is accessible to all users. Alt text to the rescue!

Alt text (alternative text) is exactly what it sounds like: a written description of an image’s content for users who can’t access the image itself. Like many best practices in web design, alt text is important for users with disabilities, but it also benefits many others.

For users who are blind or visually impaired, a screen reader can read the alt text aloud. And for those with out-of-date web browsers or slow connections, alt text will display in place of an image that doesn’t load properly. Well-written, descriptive alt text will also improve your search engine optimization (SEO). Bonus!

To make sure you’re writing alt text that’s as helpful as possible, keep the 3 Cs in mind:

• Clear: Alt text needs to include all the relevant information that’s in the image. What would someone miss by not seeing the image?
• Concise: Explain what’s in the image but don’t repeat information that’s already included in your content.
• Consistent: Try to keep things like tone, verb tense, and level of detail consistent in alt tags — just like any other written content.

The bottom line: When you write concise, accurate alt text for your images, everybody wins.

The decisions we make as part of health care — like which treatment to try, or whether to have a certain test — are very personal. Yet recent studies show that doctors make most decisions about patients’ health care, not patients themselves. Hmm.

That’s why we’re talking about shared decision making this week — and (you guessed it) how health literacy fits into the mix.

The idea behind shared decision making is that the patient’s opinion is just as important as the doctor’s. Specifically, shared decision making holds that:

• Patients are the experts about their bodies
• Doctors and patients should discuss options together, including the risks and benefits
• Patients’ preferences, beliefs, and values must be part of the equation

Shared decision making only works when patients understand the choices available to them. That’s why we ❤︎ decision aids — tools that explain the options as well as the benefits, risks, and costs. Some decision aids are web-based tools, while others are printable handouts.

This will come as no surprise, dear readers, but creating decision aids that are written and designed with your audience in mind can go a long way toward supporting shared decision making.

Here are a few particulars to keep in mind when you’re creating a decision aid:

• Write in a conversational tone
• Support your content with graphics (consider mainly visual tools for people with very limited literacy skills)
• Translate content into patients’ languages
• Test, test, test — even if informally — with your audience

The bottom line: It’s best when patients and doctors are partners in health care — and plain language decision aids can help make that happen.

Everyone from teachers to government leaders to parents knows that the right carrot or stick can be a powerful motivator. Want to get an A on that history exam? Study extra hard. Looking to avoid a parking ticket? Feed the meter. Don’t want a timeout? Give your sister a turn with the pirate hat and the plastic sword.

But outside factors aren’t the only forces at play, dear readers — sometimes, we do positive things just because we want to or because it makes us feel good. This natural (or intrinsic) motivation is at the core of self-determination theory.

The gist: When we’re naturally motivated toward a goal, we show more effort and persistence in achieving it — so we’re more likely to be successful.

Intrinsic motivation depends on 3 things that we all crave.

• Autonomy: We want to be in control of our actions
• Competence: We want to be good at stuff
• Relatedness: We want to feel understood and like we belong

Unfortunately, we often feel ambivalent about making positive changes because, let’s face it, many changes (like quitting smoking or overhauling your diet) are really hard. We all need social support to realize our potential.

One great technique for helping people discover their inner motivation is motivational interviewing, a type of clinical counseling that relies on open-ended questions and reflective listening. The goal of motivational interviewing is to help people resolve their ambivalence so they feel ready to move toward a goal.

Of course, when you’re writing health information for the masses, you don’t have the luxury of one-on-one sessions to unlock each user’s inner motivation. But you can still apply the basic principles of self-determination theory to your content by:

• Acknowledging that change is hard
• Making it clear that people have a choice to make a healthy change (or not)
• Giving them specific tips and tools for tackling the new behavior
• Boosting their confidence

Armed with a sense of control, a few useful tools, and some compassion and encouragement, your users will have a much better shot at finding the motivation they need to achieve their goals.

The bottom line: Use self-determination theory to help people discover their inner motivation to make healthy changes.

As you know, dear readers, translation is important. It makes your plain language, audience-centered content more accessible to people who struggle with English or can’t speak it at all. In the United States, that’s about 13 million people, according to the Census Bureau.

But what do we ❤︎ even more than a translated material? A bilingual one.

Despite the English language’s many quirks (Do we really need both “who” and “whom”?), many immigrants and refugees want to learn it. The fact is that knowing English can make life — and things like staying healthy and navigating the health care system in this country — a lot easier.

Bilingual materials (materials that have content in both English and another language) give non-English speakers an opportunity to learn English words they can use to communicate about their health.

Let’s say you hand a Spanish fact sheet on disease symptoms to a Spanish speaker. If you’ve done your job, she’ll read it and walk away knowing what to look out for. Yay! But when she experiences a symptom, will she be able to talk about it in English? Probably not.

With a bilingual material, your reader can read the Spanish word for “fever” and then look for the English equivalent. She’ll collect the words she needs to talk with English-speaking doctors or counselors next week, next year, and beyond.

Of course, with twice as much content, you may quickly find yourself staring at a page crammed with words. Fear not! Make your bilingual material easy to read by following a few design best practices (white space and chunks of content, oh my!).

The bottom line: Consider bilingual materials to help non-English speakers build their English vocabulary and improve communication with providers.

It’s that time again — this week, We ❤ Health Literacy turns 3! And if there’s one thing we’ve learned in our years of spreading the word about health literacy, it’s that we couldn’t do it without you, dear readers. You are absolutely the most committed and passionate fan base of any health literacy newsletter out there (there may not be a lot of competition for that title, but still).

In the coming year, we’ll occasionally be featuring a tried-and-true post from our archives. If you have any suggestions for posts that you think deserve a second go, please let us know! We’d be happy to make sure your favorite post sees another day.

And, in what has become a We ❤ Health Literacy tradition, we’re marking our birthday by sharing 5 of our most popular posts from this year — so check them out, preferably with cake. We’ll definitely be eating cake.

• You Can Do It: Making Negative Messages Positive
• What Star Wars Teaches Us About Health Literacy
• Health Lit Live with Dr. Cynthia Baur
• Things We ❤: CDC’s Everyday Words for Public Health Communication
• Use Zombies to Fight the Passive Voice

P.S. Want to give us a present? It’s easy — just encourage other health literacy geeks to sign up and share in the love!

The bottom line: On our birthday, we send thanks to our readers who make this process so rewarding each week.

It’s summertime, dear readers, and that means it’s time to dive into your summer reading lists! In this edition of the We ❤ Health Literacy Book Club, we’re talking about one of our very favorite books about the intersection of culture and health.

Written by Anne Fadiman, The Spirit Catches You and You Fall Down is the true story of a Hmong toddler named Lia Lee and her immigrant family’s experience in the American health care system. Lia had epilepsy, a condition that causes seizures. But in her family’s culture, epilepsy is known as qaug dab peg, which translates as “the spirit catches you and you fall down.” The Hmong believe that seizures happen when a person’s soul is captured by a spirit.

Lia’s parents chose to work with a shaman to call back her soul, but they also sought treatment at a hospital near their home in Merced, California. Lia’s doctors had trouble communicating with her parents because of a language barrier and a lack of translators. There was also a deep, cross-cultural misunderstanding between the Lee family and her American doctors:

“[Lia’s doctor] had no way of knowing that [her parents] had already diagnosed their daughter’s problem as the illness where the spirit catches you and you fall down. [Lia’s parents] had no way of knowing that [her doctor] had diagnosed it as epilepsy, the most common of all neurological disorders.”

The Spirit Catches You and You Fall Down is a moving story that highlights the importance of acknowledging and respecting people’s beliefs as part of their health care — in other words, cultural competence. And thanks in part to this book, cultural competence is now a required lesson in many medical schools.

The bottom line: Read about how people experience health and illness differently based on their culture in The Spirit Catches You and You Fall Down.

Picture this, dear readers: you sit down at a restaurant. You’re expecting a menu, but the waiter says he already knows what you want and serves you a roast beef sandwich. Never mind that you’re a vegetarian with a desperate craving for tomato soup.

Whether we’re talking about food or health information, the takeaway is the same — when we make assumptions about what other people want or need, we can easily get into trouble.

That’s why human-centered design (HCD) is so important. As you may know, HCD is a method for developing websites and products that involves the target audience as co-creators in every step of the process. HCD allows you to stop guessing about your audience and get reliable information straight from the source.

From there, you’re in a prime position to serve up some soup — or whatever it is that will meet your users’ needs. HCD is a win-win: your users will be satisfied and you won’t waste valuable time, energy, and money making a sandwich that ends up in the trash.

So, when developing any kind of product, follow an HCD process. Here’s one example of how it might play out:

1. Understand user needs. Say you’re thinking about creating an app to help older adults keep track of their medicines. You ask some questions up front and learn that your target audience prefers a paper system to a digital one. Bye-bye, app.
2. Test the product with users. You do some user testing on a budget to look for issues. Participants say they don’t get why it’s a big deal to skip their meds. Now you know you need to address the question, what’s in it for me?
3. Incorporate user feedback to refine your product. You add a strong main message to the beginning of your material that describes the benefits of taking medicines as prescribed. The tool is now clear about the payoff for your users!

The bottom line: Everybody wins when you follow a human-centered design process and create products people actually want.

We send our thoughts to those who lost family and friends in this act of hate. We send our gratitude to those who helped the injured. We send our support to the LGBT community and the Latino community.

Tragedy has a way of reminding us to be better to one another. In honor of the lives that were lost in Orlando, let’s choose to be better, love better, and do better.