Category: We Heart Health Literacy

Here at We ❤️ Health Literacy Headquarters, we’ve been thinking a lot about disability and communication. And we’ve just come across a book that captures those themes perfectly. In today’s edition of We ❤️ Health Literacy Book Club, we’re exploring a must-read novel: True Biz by Sara Nović.

True Biz follows a diverse cast of characters at the River Valley School for the Deaf. We meet Charlie, a new student who’s never met another Deaf person before; Austin, a popular teenage boy from a Deaf family; and February, the school’s headmistress and a child of Deaf adults (CODA). When the local superintendent decides to close River Valley, Charlie, Austin, and February must decide how far they’re willing to go to save their school.

True Biz is a fascinating introduction to Deaf culture and activism. With short, easy-to-digest lessons between chapters, readers learn about American Sign Language (ASL) and Deaf history alongside the characters. And we discovered a few lessons that apply to our work as health communicators, too!

Give people tools to advocate for themselves. Growing up, Charlie always struggled to understand conversations with her doctor. At River Valley, Charlie learns that she can ask for a medical interpreter at the doctor’s office. This simple accommodation allows Charlie to learn more about her health, advocate for herself, and take control of her care. As health communicators, we can foster self-advocacy by letting people know what accommodations are available and how to access them. This might look like educating people about their right to a medical interpreter, informing hospital visitors about accessible seating and quiet rooms, or clearly labeling accessibility features on a website.

Consider historical context. Did you know that the inventor Alexander Graham Bell played a key role in the early days of deaf education? Did you know he promoted oralism — a philosophy that pushed Deaf children to learn spoken English instead of ASL, denying them access to a shared language and culture? We didn’t!

When you’re writing about a specific disability, it’s helpful to understand historical events that have affected the community and to consider how your messages may fit into that context. As the old saying goes, if we don’t know history, we’re doomed to repeat it — or, when it comes to health comm, we’re likely to write something that will alienate our audience.

Understand that people may disagree about treatment. In True Biz, cochlear implants create conflict between Deaf teens Charlie and Austin and their parents. In many cases, parents of children with disabilities must make big treatment decisions before their kids are old enough to give consent. Last year, parents of children with dwarfism faced a difficult decision when a breakthrough drug came to market — a treatment that could help their kids grow a few extra inches. Medical advances like these often spark big questions about disability and identity. Where’s the line between helping a child thrive and helping the child assimilate into a society designed for nondisabled people?

Even within disability communities, people may disagree on what treatment options are helpful or harmful — or what conditions should be treated at all. So when you’re writing about these emotionally charged topics, take time to learn about different points of view. Which brings us to…

Learn from the experts. Throughout the novel, hearing people impose their own ideas on Deaf people without taking time to learn from the Deaf community — or simply ask Deaf people what they need. When you’re communicating about disability, seeking out community-led organizations (like the National Association of the Deaf) and reading books by authors who share that disabled experience (like True Biz!) is a great way to learn. And be sure to get input from your priority audience, even if there’s not much room in your budget.

The bottom line: True Biz is a fascinating introduction to Deaf culture — and it’s full of lessons for health communicators!

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Copy/paste to share on social (and tag us!): CommunicateHealth is back with another edition of the We ❤️ #HealthLiteracy Book Club! Today we’re sharing #HealthComm lessons from @NovicSara’s novel True Biz: https://communicatehealth.com/wehearthealthliteracy/book-club-true-biz/

Picture this: You’re in the ER with intense pain in your leg. It’s early pandemic days, so you’re concerned that your outing to the hospital will result not only in some sort of medical attention — but also in a COVID diagnosis. Not to mention the fact that COVID means no hospital visitors, so you’re alone.

Then a doctor you’ve never met appears, announcing that your pain is due to a blood clot — and she lays out some options, one of which is emergency surgery. Considering the context, how do you think you’d rate your health literacy skills in that moment? Do you imagine you’d be on top of your game at digesting complex health information and using it to make informed decisions?

While we can’t know for sure — perhaps this hypothetical “you” has superpowers that are beyond the rest of us — we’re going to make an educated guess that no, you would not be at the top of your game. Because even though your actual day job is to create plain language health materials, the stress, pain, and anxiety of your present situation has totally changed said game.

This is representative of a concept that we’re always talking about here at We ❤️ Health Literacy HQ: Anyone can have limited health literacy skills sometimes. In other words, health literacy is a state, not a trait.

This is a phrase that’s gained traction over the years (and seems most often attributed to Dr. Dean Schillinger, though if you have any concrete info about its origin, we’d ❤️ to hear it!). But it wasn’t necessarily the standard way to look at things when health literacy was a somewhat new topic of conversation.

Instead, that conversation often went something like this: “As many as 9 in 10 Americans have limited health literacy skills. That means we’d better make our health info easier for the people with limited health literacy skills to understand.” We also drew on data telling us who was most likely to have limited health literacy skills — for example, people with lower levels of education and household incomes or non-native English speakers.

While that’s all true — and it’s also true we had to start somewhere — this framing puts the onus on individuals’ lack of ability to access, understand, and use health information. And in doing so, it glosses over the fact that health literacy is situational — it’s not a fixed character trait. When we prioritize and improve it, we make things easier for everyone — including people with super-high baseline health literacy skills who happen to be busy, stressed, sick, or scared in the moment.

And prioritizing and improving health literacy requires systemic change — not modifications to account for people’s “deficits.” As CH President Stacy Robison wrote, “If the ‘problem’ affects 90 percent of people, maybe it’s not them… Maybe it’s us!”

Being such committed health literacy advocates, dear readers, you’ve doubtless heard all this before. But it’s an incredibly important part of the health literacy conversation, and it’s critical that we keep ourselves accountable in this space. So the next time you’re giving a health literacy training, working through a health comm challenge with your colleagues, or talking about health literacy at a dinner party (wait, you don’t do that?), keep this idea top of mind. When we do that, everyone wins. 

The bottom line: Health literacy is a state, not a trait. And it’s very important that health communicators bring that perspective to the table.  

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Tweet about it: #HealthLiteracy is a state, not a trait. And it’s very important that #HealthComm professionals bring that perspective to the table, says @CommunicateHlth: https://bit.ly/3PaJFpt

Though it’s almost impossible to process that there’s yet another virus spreading around the world, here we are. You’ve doubtless been keeping an eye on monkeypox (or MPX) — and well, dear readers, there’s a lot to unpack.

Any disease outbreak comes with specific communication needs, but there are some extra layers here: namely, that lots of the current cases appear to be in men who have sex with men. Trans women and nonbinary folks may also be at higher risk. But the virus hasn’t necessarily behaved this way historically, and anyone can get monkeypox by being in close contact with someone who has it. The resulting challenge — how to get the right info to the right people in the right way given what we know now about who’s most at risk — strikes right at the heart of our health comm charge.

So this week, we’re bringing you some reads (and listens) on the monkeypox outbreak and its potential implications, communication challenges arising from the virus’s unusual behavior, and even the words we use to talk about it. Read on for more — and let us know if you have follow-up comments. This is a very interesting and important space, and we’ll be watching closely.

• Monkeypox Is Not a Public Health Emergency of International Concern, But Perhaps It Should Be (Your Local Epidemiologist)
  You know we ❤️ us some YLE! In this issue, YLE (aka Dr. Jetelina) covers WHO’s decision last month not to declare monkeypox a Public Health Emergency of International Concern (PHEIC). In doing so, she shares some of the most up-to-date science about monkeypox — touching on topics like transmission modes and vaccine supply. As always, you can count on YLE to provide the data behind the headlines, and she raises some important questions about PHEIC classification and public health preparedness. (Quick update since we wrote this post on July 6: It sounds like WHO may be rethinking this decision. Stay tuned!)

• How the Hard Lessons of the AIDS Crisis Are Shaping the Response to the Monkeypox Outbreak (STAT)
  Many people have drawn comparisons between the early HIV/AIDS crisis and the current monkeypox outbreak — this because a lot of the cases are in men and trans women who have sex with men. And there certainly are some relevant lessons learned. The author asks the million-dollar question right at the top of the piece: “How do you get tools and information about the disease to those who need it without wrongly implying that only that group is at risk, or publicly associating an unfamiliar disease with an already stigmatized community?” It’s a really, really good question.

• Warning Vulnerable Populations About Monkeypox Without Stigmatizing Them (NPR)
  Listen to this recent edition of Consider This (or read the transcript) for a deep dive into the monkeypox outbreak and why stigma in public health is so problematic. It also touches on restoring credibility and trust in public health officials after the COVID-19 pandemic. As Dr. Boghuma K. Titanji of Emory University says, “When we … make the foundation of [our] messaging … humility, in the sense that not every question around a particular disease situation is resolved and that we may not have all the answers — I think that that vulnerability … restores some of that trust because it makes the public health officials come across as being human.” YES!

• ‘Discriminatory and Stigmatizing’: Scientists Push to Rename Monkeypox Viruses (STAT)
  This piece looks at efforts to retire the current terms used to distinguish between monkeypox viruses — which are specific geographic locations in Africa. (If this reminds you of some people’s inclination to call the coronavirus “the Wuhan virus,” you’re on the right track.) It goes on to explain an additional change that some folks in the scientific community are proposing to the name itself. As health comm professionals, we all know how much power lies in the words and labels we use to talk about public health issues. We ❤️ the discussion of how disease terminology can both compromise accuracy and perpetuate harmful stigma.

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Tweet about it: Check out @CommunicateHlth’s latest edition of #HealthComm Headlines — this one’s all about #monkeypox, or #MPX. Lots to unpack here: https://bit.ly/3NLq9OR

Here at We ❤️ Health Literacy HQ, we’re proud to be an LGBTQ+-owned organization — and we always look forward to Pride Month, which kicked off last week! Pride is all about acceptance, equity, celebrating the work of LGBTQ+ people, and raising awareness of issues that affect LGBTQ+ communities.

And as you doubtless know, dear readers, we’ve been thinking a lot lately about inclusive, respectful language — and what that means for health communicators like us. So we thought this was a great time to bring you a very simple — but very important — tip about gender pronouns.

Ever heard a person ask about someone’s “preferred pronouns”? Or maybe you’ve asked that yourself — many of us have. As a health comm professional, you may have even written “preferred pronouns” in a survey or some other health-related form collecting personal information. And while this is probably almost always well-intentioned — and is certainly an improvement from assuming we know someone’s pronouns based on how they look — it still presents a problem.

It’s the “preferred” that’s the issue here. Introducing “preferred” to this equation basically implies that using the correct pronouns to talk about someone is optional — a matter of preference. Think about it: Generally speaking, even if you prefer one thing, you’re likely still okay with an alternative (“I like plain coffee, but I prefer my coffee with milk”).

Part of a person’s actual identity is simply not on the same level as your morning caffeine choice. There’s nothing “preferred” about it. Someone’s pronouns are, factually, their pronouns — and using them correctly demonstrates respect for that person.

So save your questions about “preference” for true matters of, you know, preference! Keep it simple by asking, “What are your pronouns?” 

We know we don’t have to tell you, dear readers, but words are tremendously powerful. And in our line of work, we have a real responsibility to communicate health information with empathy. Dropping the loaded qualifier from “preferred pronouns” is one small step we can take to do better.

The bottom line: A person’s identity is not a preference. When you’re asking or writing about pronouns, drop the “preferred.”

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Tweet about it: A person’s identity is not a preference. It’s time to drop “preferred pronouns” once and for all, says @CommunicateHlth: https://bit.ly/3QeMneu #HealthComm #HealthLit

You know we ❤️ sharing helpful resources for health communicators. Today we’re shining the spotlight on Your Local Epidemiologist (YLE), a Substack newsletter from epidemiologist Dr. Katelyn Jetelina.

In each issue of YLE, Dr. Jetelina breaks down the latest COVID-19 news and other timely public health topics, explaining the data behind the headlines. And this can be extremely helpful for people like us, dear readers. Turns out that it’s much easier to write plain language content about data-informed things when we understand said data ourselves.

In the early days of the pandemic, Dr. Jetelina started writing COVID-19 news updates for her students and colleagues at the University of Texas. Almost 3 years later, YLE has expanded to cover more public health topics and become a worldwide resource, reaching 125 million people in 150 countries!

In this politically polarized time, we ❤️ how Dr. Jetelina focuses on the science, demystifying daunting data points. YLE is especially helpful for communicators who don’t have much experience analyzing data or don’t come from traditional public health backgrounds.

You can sign up for emails or browse past issues of YLE on Substack. Here are a couple of our recent favorites if you want to a good place to start:

• Are we in a public health emergency? This issue tackles the question that’s on our minds constantly: More than 2 years into the pandemic, is COVID (still) an emergency?
• Banning abortions will not stop abortions. In this one, data tell the story of what happens when access to abortion is limited.

The bottom line: Check out Your Local Epidemiologist to understand the science behind the latest COVID-19 news and other timely public health topics.

Tweet about it: In Your Local Epidemiologist, @dr_kkjetelina breaks down the science behind timely #PublicHealth topics. It’s a great resource for #HealthComm folks, says @CommunicateHlth: https://bit.ly/3tcQjCO

Just weeks after the horrific racially motivated shooting in Buffalo, New York, we’re heartbroken by this week’s mass shooting in Uvalde, Texas. The trauma and grief that the Uvalde community is facing after the slaughter of 19 children and 2 teachers is unimaginable.

In 2020, firearms became the leading cause of death for children and teens in the United States. It was also the year the world shut down as the pandemic took hold. There was so much uncertainty, so many questions that we just didn’t have answers to. We needed public health data, and time to figure out what that data meant. Particularly before vaccines, there were times when it was hard to know the right thing to do.

That uncertainty is one of the key differences that sets the COVID pandemic apart from another public health crisis responsible for tremendous loss of lives: the American gun violence epidemic.

When it comes to gun violence, we know the answers to all the hard questions. We have the data. We know that the United States has the highest number of privately owned guns in the world. We know that more guns = more gun deaths. We know what happens when other countries pass gun control legislation. We know exactly the right thing to do.

Also note that America’s gun violence problem is an epidemic, not a pandemic. That’s because it’s specific to the United States. No other high-income country has this problem. It only happens here.

As Senator Chris Murphy said in an impassioned speech on the Senate floor the day of the shooting: “Nowhere else do little kids go to school thinking they might be shot that day. Nowhere else do parents have to talk to their kids, as I have had to do, about why they got locked into a bathroom and told to be quiet for 5 minutes just in case a bad man entered that building. Nowhere else does that happen except here in the United States of America, and it is a choice — it is our choice to let it continue.”

This is an important time to be part of the public health community. Let’s use our knowledge and our voices — not our thoughts and prayers — to fight for a safer tomorrow.

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Tweet about it: #GunViolence in the United States is a #PublicHealth crisis. As public health professionals, we must use our knowledge and our voices to fight for a safer future. https://bit.ly/38LrLdi @CommunicateHlth

Here at We ❤️ Health Literacy HQ, we’ve been talking a lot about audience segmentation lately. New to the term, dear readers? Not to worry! In a nutshell, audience segmentation is a way to narrow down the audience for your health messages from a really big group — like “the general public” — to a much smaller one. (You might remember our post about writing for your audience — it’s one of our favorite things to nerd out over!)

Identifying a specific group as your audience helps you focus your messages on the things they care about. That makes them more likely to pay attention — and more likely to take your advice about a health behavior.

Say you’re writing a series of PSAs about how to prevent late-stage cat head. Your first step is to find out who your audience is — who are the people most at risk of late-stage cat head and what are their information needs? But audience segmentation isn’t just about making your priority audience specific. It’s also about choosing which group (or audience segment, if you will) could benefit the most from getting health information. Ask yourself: Who’s been overlooked by other communications?

You can segment your audience based on demographic factors — like age, gender, level of education, income, or where they live. One way to find that information is by looking at public health data, like from the CDC’s National Center for Health Statistics. But you also want to look at things that may be less clear-cut. For example:

• Cultural factors — people’s native or preferred language, cultural heritage, or religious beliefs
• Behavioral factors — how people get information, how they make choices about their health, and how willing they are to change their behavior
• Other factors that play a big role in people’s lives — like values, attitudes, interests, and lifestyles

Just because 2 people are roughly the same age and have a similar income, it doesn’t mean they care about the same things. And that means the way they respond (or don’t respond) to messages about their health will be different.

These things also give you clues about where to place your messages so your audience will see them. After all, in today’s digital environment, it seems like everything’s tailored to us — you know, you google “Does cat head cause runny nose?” and an ad for allergy medicine pops up in your Facebook feed.

So how do you find out what it is your audience cares about? The best way is… wait for it… to ask them! There are lots of ways to gather insights from folks — focus groups, in-depth interviews, or online surveys. And if you don’t have the budget for formative research, try reaching out to your professional or social circle to gut check your ideas and assumptions.

However you go about learning more about your priority audience, the outcome is the same. Audience segmentation helps health communicators make products that resonate with our audiences — and that’s a win for everyone.

The bottom line: Audience segmentation is a great way to narrow down who you want to reach — so you can focus on the things they care about.

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Tweet about it: Use audience segmentation to narrow down who you want to reach — so you can focus on the things they care about, says @CommunicateHlth: https://bit.ly/3w4DfRL #HealthLit

Here at We ❤️ Health Literacy HQ, communicating health information is the heart of our work. Regular readers of our blog may know that we try to keep it light when we can (with health literacy tips from Elmo or an ode to emojis, for example), but we always keep in mind why we do what we do: For some people, health literacy is literally lifesaving.

Take kidney disease. According to data from 2021, there are about 90,000 people on the kidney transplant waitlist, but only about 24,000 transplants happen each year. And you might assume that once a person is placed on the waitlist, all they have to do is sit tight until a kidney is available… right? But that’s not always the case — thousands of people die waiting for kidney transplants each year. People who urgently need a transplant simply may not be able to wait out the waitlist.

Some health organizations provide tips for people with kidney disease on how to launch their own campaign to find a living kidney donor — someone who’ll donate a kidney to them directly so they don’t have to stay on the waitlist. In these cases, the patient is often the one spreading the word on social media, talking to potential donors about the process, and coordinating with the transplant center — all while managing their health care.

Clearly, it’s not ideal to put people in the position of having to ask friends and family members for a life-saving organ. And this unfortunate situation reminds us just how critical health literacy is. Essentially, it seems people with kidney disease need superhero-level health literacy skills just to stay alive. Studies have shown that people with high health literacy skills are more likely to be considered for transplants and have better long-term health outcomes.

But here’s a thought: What if we designed health systems and health information so that people don’t have to have superhero-level health literacy skills to be healthy and well? There are certainly some big structural issues at play here. But as health communicators, we hope you see and feel the value of prioritizing health literacy in your work. This could look like:

• Designing easy-to-understand doctor’s office intake forms — and making them available in a variety of formats
• Using tools like decision aids to help people navigate tricky health decisions
• Trying the teach-back method to make sure people understand their next steps
• Communicating with empathy every time

The bottom line: For some people with kidney disease, health literacy can be the difference between life and death. As health communicators, we can help change that.

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Tweet about it: For some people with #KidneyDisease, #HealthLiteracy can be the difference between life and death. As #HealthComm professionals, we can help change that, says @CommunicateHlth: https://bit.ly/3MzXn3J

As you know, we have a long history at We ❤️ Health Literacy HQ of calling out jargon terms and advocating for simpler alternatives. Over the years, we’ve covered everything from technical medical terms like “hypertension” to public health mainstays like “morbidity and mortality” to sneakily tricky words like “detect.”

This week, we’re keeping it simple (our fave!) and presenting you with 3 verbs you can cut from your plain language vocabulary once and for all. They’re all common in health comm, and they all have one-to-one swaps — which means you really never need to use them. Thrilling, isn’t it? We hope you enjoy!

First up, we have “administer.” This one pops up in vaccine communication all the time, but we think it’s about time for that to stop. Why? Because consumers just don’t need to hear it when you can use the much shorter and simpler “give” instead.

• Out: Doctors have administered about a million doses of the vaccine.
• In: Doctors have given about a million doses of the vaccine.

Moving right along, let’s talk about “ensure” for a moment, shall we? Now, “ensure” might seem like a pretty plain language term. But readers with limited literacy or health literacy skills may confuse it with something related to health insurance (or a nutrient-boosting beverage option!), so why risk it? We say just use “make sure.”

• Out: Read the instructions carefully to ensure you understand how to take the medicine.
• In: Read the instructions carefully to make sure you understand how to take the medicine.

And we’ve saved the best (or our least favorite?) for last: good old “utilize.” And frankly, dear readers, we’d suggest dropping this one from your vocabulary entirely — not just from your plain language health content. It just seems so unnecessary when you consider that “use” does the exact same job — with a third of the syllables!

• Out: The doctor may utilize blood tests to make a diagnosis.
• [Do we even have to write it?!]

The bottom line: “Administer,” “ensure,” and “utilize” have no place in your plain language health content — they’re just too easy to swap out!

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Tweet about it: This week, @CommunicateHlth brings you 3 verbs you can drop from your #PlainLanguage health writing once and for all: https://bit.ly/3JKMLgx #HealthLit #HealthComm

Here at We ❤️ Health Literacy HQ, we’ve been hearing the term “endemic” a lot lately. (As in, “Is COVID endemic yet?”) We’ve also noticed that, like with so many things COVID, many people are confused about the term. And for good reason! People often misuse it, and it’s easy to mix it up with “epidemic.” Plus, “endemic” starts with the word “end” — which makes it sound like a pretty good thing right about now.

As health communicators, we can help by clearly explaining what “endemic” means — and doesn’t mean — to our audiences. Let’s start with the gist: A disease is endemic if people in a particular area continue to get it — that is, it never completely goes away — but it’s predictable. In other words, a relatively steady number of people in a specific place get the disease, and experts have a pretty good idea how it will play out.

Think of the flu. Most flu strains are endemic in most places, meaning they never go away entirely, but we can be pretty sure when cases will rise (you know, flu season) and then fall again. The flu example is also a good way to demonstrate what “endemic” doesn’t mean — specifically, that it does not mean harmless. The flu causes tens of thousands of deaths a year, making it a serious public health issue.

It can also be helpful to explain that it’s still possible to have an outbreak, epidemic, or pandemic of an endemic disease. Once COVID becomes endemic, this could happen if, say, a new variant emerges and current vaccines don’t offer enough immunity. (Remember the H1N1 flu pandemic of 2009?)

So when will COVID become endemic, you ask? Unfortunately, dear readers, no one knows. We’re not there yet because experts aren’t able to accurately predict what will happen next, mostly due to the possibility of new variants. It’s also good to keep in mind that the “when” will probably vary from place to place. And while some people might find this uncertainty frustrating, the good news is that we do know how to protect ourselves — like with vaccines, masks, and testing.

The bottom line: Experts believe COVID will become endemic. So let’s help people understand what that does — and doesn’t — mean.

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Tweet about it: Everyone’s throwing around the term “endemic” lately! Let’s make sure people understand what it does — and doesn’t — mean, says @CommunicateHlth: https://bit.ly/3uYkVYV #HealthLit