Category: We Heart Health Literacy

Here at We ❤️ Health Literacy Headquarters, we’ve talked a lot about why some of the terms public health professionals use to refer to groups of people can be problematic. In recent weeks, we’ve unpacked “hard to reach,” “target audience,” and “vulnerable communities.” This week, we’re adding “minority groups” to the list.

Consider, dear readers, what we actually mean when we use “minority groups” or “minorities” to describe our audiences. Often, we’re talking about — or even directly to — racial and ethnic groups made up of people of color. We might also use “minority” to talk about the LGBTQ+ community or people from specific religious communities.

But here’s the thing: The word “minority” itself suggests that the people we’re talking about are less important than the implied “majority.” We were excited to see this captured in guidance for inclusive language from the American Academy of Pediatrics, which says that the term “minority” may be disrespectful as it “denotes belief in human hierarchy.”

Plus, when it comes to racial and ethnic groups, “minority” may be just plain inaccurate! Globally, there are more people of color than white people. And in the United States, the Pew Research Center estimates that any singular racial or ethnic group majority will be a thing of the past within the next few decades.

So what’s a health communicator to do? Well, as we’re so fond of saying, be specific about which communities you really mean. And when you’re talking about disparities among specific racial and ethnic groups, be sure to call out systemic racism when it applies. Here’s an example.

• Instead of: Some racial and ethnic minority groups are at higher risk of dying from COVID-19.
• Try: Due to the health effects of racism, Black and Hispanic adults are at higher risk of dying from COVID-19.

The bottom line: “Minority groups” is vague and potentially alienating — get more specific in your health materials instead.

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Tweet about it: “Minority groups” does more harm than good in our #HealthLit materials, says @CommunicateHlth. Learn about some alternatives you can use instead: https://bit.ly/3pmq22b

You know we ❤️ sharing cool things we find out in the world with you, dear readers. So this week, we’re coming at you with a super interesting new project called Healthy Democracy, Healthy People.

The project started out as VoteSAFE Public Health — a collaboration between public health heavy hitters like the American Public Health Association, the Association of State and Territorial Health Officials, and more. It aimed to advance health equity by making sure everyone has the opportunity to vote safely.

The newer iteration of the initiative is a nonpartisan marriage of public health and civic engagement orgs. It focuses on the critical connection between civic participation and community health — because we know that when all people are safely able to vote, they can add their voices to policy conversations that directly impact their health. And according to the project’s website, the COVID-19 pandemic has shined a light on the need for this kind of collaboration by creating more barriers to safe and equitable participation in the electoral process.

This is exactly the kind of project we think is necessary in today’s world. There are lots of connections between civic literacy and health literacy, and we’re here for it! If you’re looking for a good place to start, check out the project’s innovative Health & Democracy Index, which compares state-level public health indicators and voter turnout with how inclusive (or restrictive) that state’s voting policies are.

We don’t want to spoil anything, but if you had to guess: Are inclusive voting policies and increased civic engagement good or bad for community health?

We’ll leave it there.

The bottom line: Check out Healthy Democracy, Healthy People to learn about the crucial intersection between civic participation and public health.

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Tweet about it: Healthy Democracy, Healthy People is highlighting the critical relationship between civic engagement and #PublicHealth! @CommunicateHlth says check out this super important work: https://bit.ly/30DyxNt

Here at We ❤️ Health Literacy Headquarters, we tend to shy away from self-promotion. But this week, dear readers, we just had to let you know that CommunicateHealth President Stacy Robison recently made a podcast appearance for a very good cause: health literacy, of course!

If you haven’t heard of it, InformED is a podcast from the International Society for Medical Publication Professionals, or ISMPP. The show covers important and timely topics for health communicators and publication professionals. And in the most recent episode, Stacy joined Laurie Myers — Director of Global Health Literacy and Oncology Health Equity at Merck — to kick off a new series on equity, diversity, and inclusion.

Stacy and Laurie focus on these key public health themes through the lens of the thing we ❤️ most, and we think the result was pretty cool. It touches on racial justice, inclusive language, and social determinants of health — things that are top of mind for so many of us in health comm at the moment. And it’s not every day that public health and queer identity politics come up in the same conversation.

So give Episode 5 a listen — and a big thanks to the folks at ISMPP for putting this together!

The bottom line: Check out the most recent episode of InformED to learn about achieving equity, diversity, and inclusion through health literacy.  

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Tweet about it: Interested in how #HealthLit can help us achieve equity, diversity, and inclusion? Check out @CommunicateHlth President Stacy Robison and @lauriemyersHL on the most recent episode of @ISMPP’s InformED podcast: https://bit.ly/3CNPdQP #ISMPP_Podcast

Allow us to open this week’s post, dear readers, with a more personal anecdote than is typical on this page. Last month, a friend of We ❤️ Health Literacy tested positive for COVID-19. A public health grad student, she was fully vaccinated and therefore assumed she was in for a mild illness — which is the public health party line for what to expect from breakthrough cases.

What followed was over a week of fever, congestion, cough, shortness of breath, and stomach problems — not to mention her growing anxiety as she kept feeling bad. When would she turn the corner? Would she turn the wrong corner and need oxygen? The anxiety got particularly bad overnight, when she’d wake up drenched in sweat from her oscillating yet unceasing fever.

Essentially, she was really sick and really scared, and she certainly never once used the word “mild” to describe her illness. Yet when she put her public health hat on, she understood that hers absolutely was a mild case of COVID — she didn’t require hospitalization, she didn’t develop any serious complications, and she fully recovered.

The situation got us thinking about the discrepancy between how people who are sick with COVID might feel and how we write about how they might feel in our health materials. Our conclusion? For the most part, talking about “mild” cases of COVID isn’t doing anyone any favors.

First, it’s both extremely vague and entirely subjective. To consumers, classifying a symptom or injury or illness as “mild” means pretty close to nothing — and one person could interpret it completely differently from another. Second, calling a sickness like the one outlined above “mild” could be undermining and confusing to someone who’s sick and scared — both things that we know can impact a person’s health literacy skills.

So what’s a health communicator to do? We say this one’s a 2-parter: get specific and bring the empathy. Instead of relying on people to interpret what you mean by “mild,” give details when you can — what do you really mean? And when appropriate, consider explicitly acknowledging the reality that any illness from COVID might feel anything but mild. This is one of those situations where doing our due diligence means using more words, but we think it’s 100 percent worth it!

Check out some examples below.

Instead of:

• If you get COVID-19 after you’ve been fully vaccinated, you’re more likely to have a mild illness.
• People with mild symptoms can still have long-term health effects from COVID-19.
• Even mild cases of COVID-19 can make you feel very sick.

Try:

• If you get COVID-19 after you’ve been fully vaccinated, you’re much less likely to have serious complications or need to stay in the hospital.
• People who don’t feel very sick can still have long-term health effects from COVID-19.
• Even if you don’t need medical care for your COVID-19 symptoms, you could still have a fever, headache, cough, or body aches that make you feel very sick. It’s normal to feel scared or worried — setting up a regular phone call with a friend or family member to check in can help.

The bottom line: Calling a case of COVID “mild” is vague and subjective. In consumer-facing materials, get specific — and don’t forget the empathy.

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Tweet about it: Calling a case of #COVID19 “mild” is vague and subjective, says @CommunicateHlth. Instead, get specific and bring the empathy: https://bit.ly/2XSeKZJ #HealthComm

Here at We ❤️ Health Literacy Headquarters, we’re all about providing need-to-know info only. So today, allow us to bring you a short and sweet one.

Let’s say you’re browsing health stats, perusing a health insurance booklet, or even (gasp!) checking out a health education material — and you stumble on the word “persons.” If you’re anything like us, dear readers, that single word could stop you in your tracks. It’s distracting because it sounds formal and antiquated — and just plain awkward.

Why on earth would you use “persons” when you can use “people”? Well, we have a simple answer. No reason at all!

While it’s true that historically, there was a distinction between the 2 words, modern style guides have agreed that at this point, it’s a moot point. Some persons people might still argue that “persons” has a rightful place in legalese (we’d still vote no), and there are some established phrases that sort of roll off the tongue (think: “persons of interest”). But we see no need to keep that word around — especially not in consumer-facing health materials, when a conversational tone can help our audiences relate to and understand critical information.

This is the point in the post where we usually give you a bunch of examples to drive the idea home, but it wasn’t all that inspiring — write “people with diabetes” instead of “persons with diabetes” and so on. So we’ll leave it here: when writing about people in your health-related materials, take “persons” out of your vocabulary. Full stop.

The bottom line: Avoid “persons” in your health materials (and in general!) — “people” is a much better choice.  

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Tweet about it: Why say “persons” when you can say “people”? No reason at all, says @CommunicateHlth — and especially not in #HealthComm. Read more: https://bit.ly/3lCeS8N

Here at We ❤️ Health Literacy Headquarters, we’ve been thinking a lot about insider public health phrases — the terms we use with each other to talk about our work. Recently, we’ve unpacked “vulnerable” and “hard to reach.” And this week, we’re taking a closer look at “at-risk.”

Public health professionals often use “at-risk” to describe people who are more likely to have poor health outcomes (think “at-risk youth” or “at-risk populations”). You may also be familiar with the term in, er, terms of education — people often use “at-risk students” to refer to those who are less likely to finish school.

Well, dear readers, we think it’s about time we phase out “at-risk” when used like that (you know, as an adjective). It’s a vague label that says nothing about what people are at risk for — and too often it shifts the focus away from systemic problems that cause people to be “at-risk” in the first place. Our solution? Be specific by naming the risk you’re talking about. Here are a couple examples:

• Let’s say you’re working on a gun violence prevention program for teenagers. Instead of referring to your priority (not target!) audience in a presentation as “at-risk teens,” be explicit: “teens who are at risk for experiencing gun violence.”
• Or you’re doing a needs assessment in a cluster of Black communities with especially high rates of COVID-19 cases. Instead of “at-risk communities,” say what you mean: “Black communities that are at risk for worse health outcomes from COVID-19.”

As we’ve discussed before, it’s also important to get to the root causes that increase the risk of disease and other poor health outcomes in certain groups — like institutional racism — whenever possible. So, sticking with the COVID example, you might say: “Black communities that are at risk for worse health outcomes from COVID-19 due to the effects of racism.”

And a final aside: if you’re writing for a consumer audience, it’s often best to ditch the jargon-y “at risk” for a more plain language alternative. “More likely to” is a good conversational option that often works (think “people who smoke are more likely to get lung cancer”).

The bottom line: Labeling people as “at-risk” is super vague, and it can even help perpetuate stigma. Instead, get specific and say what you really mean. 

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Post about it on X: Is it time to rethink how we use “at-risk”? @CommunicateHlth unpacks this common #PublicHealth term: https://bit.ly/2YrdcpI #HealthComm #HealthLiteracy

In today’s edition of We ❤️ Health Literacy Book Club, we’re diving into a must-read book on autism: We’re Not Broken: Changing the Autism Conversation. Drawing from his personal experience, autistic political journalist Eric Garcia explores what it’s really like to be autistic in America. Garcia makes a bold suggestion: instead of talking about autism as a problem to be solved, let’s focus on supporting and accommodating the needs of autistic people.

Garcia explains how the “autism epidemic” narrative of the 1990s and early 2000s often framed autism as a tragic fate or a battle to fight. While our understanding of autism has (thankfully) evolved, that messaging contributed to lasting stigma and misconceptions about the condition. Concerns about rising autism cases also opened the door to harmful pseudoscientific treatments and theories — including the longstanding myth that vaccines cause autism. And the COVID-19 pandemic has made it clear that we have a long way to go to rebuild public trust in vaccines.

Garcia argues that efforts to find causes and cures for autism have done little to improve the everyday lives of autistic people. Yet major research initiatives continue to focus on identifying genetic causes of autism. To autistic people, this can send the message that politicians, researchers, and health care professionals care more about curing autism than addressing the systemic issues that affect their well-being. For example, 85 percent of college-educated autistic adults in the United States are unemployed or underemployed, contributing to housing insecurity among autistic people.

Autistic people also face barriers within the health care system. For example, autistic women, transgender and nonbinary people, and people of color often struggle to get an official diagnosis, which they need to qualify for disability accommodations at school or work. And some autistic people have reported traumatic experiences with applied behavior analysis (ABA) therapy, a treatment that’s considered the gold standard in the United States and is often the only service covered by health insurance.

We know, dear readers, that these issues are surrounded by intense debate. But as health communicators, we have an opportunity to build trust with audiences who often feel unheard and alienated by public health messaging. When you’re creating materials about autism, keep these tips in mind:

• Ask your audience what they need. There’s a saying in the autistic community: “nothing about us without us.” So when you’re communicating about autism, it’s especially important to get input from your audience — even if there’s not much room in your budget.
• Use “autistic person,” not “person with autism.” People-first is often the go-to approach in public health, but many autistic people prefer identity-first language. Allow us to refer you to the first bullet above — it’s always a good idea to check with your audience and use the language they prefer.
• Just say “autism.” Diagnostic language around autism has evolved a lot over the past few decades. Today, the official diagnosis used in the United States is autism spectrum disorder, or ASD. But keeping with our plain language principles, we generally recommend using “autism” — which people are likely to be familiar with — unless you’re specifically talking about someone’s diagnosis or the diagnostic testing process.
• Skip outdated diagnoses like Asperger’s syndrome and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). These terms were taken out of the Diagnostic and Statistical Manual of Mental Disorders (DSM) back in 2013.
• Choose images that represent the diversity of autistic people. Media representation might convince you that all autistic people are white boys who like trains or, later, white men who like computers. In reality, of course, there are autistic people of all races, ages, and gender identities.
• Share resources developed by and for autistic people. Community-led organizations like the Autistic Self-Advocacy Network or Autistic Women and Nonbinary Network are a good place to start.

The bottom line: Eric Garcia’s We’re Not Broken: Changing the Autism Conversation is a must-read for health communicators everywhere.

Tweet about it: .@CommunicateHlth is back with another edition of the We ❤️ #HealthLit Book Club! Find out why @EricMGarcia’s We’re Not Broken: Changing the Autism Conversation is a must-read for #HealthComm folks: https://bit.ly/3F9eEh0

Here at We ❤️ Health Literacy HQ, we write about HIV a lot. After all, preventing HIV is a public health priority.

Not long ago, we covered how to explain medicines that can prevent HIV in plain language. And when we did, we got a request from one of you, dear readers, to cover “viral load” next. (Here’s your reminder to always reach out with post ideas or requests!)

Why do we need to talk about viral load, you ask? For people with HIV, viral load is a key indicator of how healthy they are. That means they’re likely to hear the term from their doctors. And that means it’s important to make sure they understand it.

So here’s how to give a quick but clear explanation of “viral load”:

• The amount of HIV in your body is called your viral load. When your viral load is low, your immune system can fight infections so you can stay healthy.
• If your viral load is so low that a test can’t find any HIV in your body, it’s called an undetectable viral load. This means there’s almost no chance you can pass HIV to other people through sex.
• You can keep your viral load low by taking HIV medicines — called antiretroviral therapy, or ART.

Our eagle-eyed readers may notice that we recently shared thoughts on avoiding “detect” and other forms of the word. So it’s worth noting that we’d make an exception for “undetectable” since people who have HIV are so likely to hear the term that it’s important to teach it.

Also, you may have heard people refer to the info in that second bullet above as “U=U,” or “undetectable=untransmittable.” While it’s a super important concept (and also a social marketing campaign!), we’d generally recommend against using it in plain language consumer materials. We know that users with limited literacy may struggle to interpret symbols, and the terms themselves aren’t particularly plain language anyway. If you do want to go that route, be sure to contextualize it in plain language.

The bottom line: When you’re writing materials for people who have HIV, make sure to explain “viral load” in plain language. 

Tweet about it: People with #HIV need to understand the term “viral load,” but it’s not exactly #PlainLanguage! @CommunicateHlth has #HealthLit tips that can help: https://bit.ly/3kezraE

If there was ever a health issue that’s divided our country, it’s abortion. And it’s been top of mind here at We ❤️ Health Literacy HQ since we learned last week that Texas passed one of the most restrictive abortion laws in recent history. The new law makes abortion illegal before many people even know they’re pregnant. And as if that wasn’t bad enough, it doesn’t make exceptions for pregnancies resulting from rape or incest.

As health communicators, it’s more important than ever that we provide clear, non-judgmental information about abortion. Let’s start with some basics:

• Abortion is safe. Many studies have shown that all types of abortion are safe and effective.
• Abortion is very common. In fact, about 1 in 4 women in the United States will have an abortion by the time they’re age 45.
• Abortion is a personal decision. There are lots of reasons a person might decide to get an abortion — and they’re all valid.
• Abortion is essential health care. Abortion is a medical decision. And don’t just take our word for it — the American College of Obstetricians and Gynecologists, the National Health Law Program, Amnesty International, and other organizations say so, too.

But if abortion is safe, common, and essential, why is it so dang political? In recent years, states have passed all kinds of laws making it harder to get an abortion — regulating when you can have one, why you can have one, where you can have one, what kind of health care provider you see… the list goes on. And we know that abortion restrictions disproportionately affect people of color, people in rural communities, undocumented immigrants, and young adults.

So what’s a health communicator to do? While there’s no magic bullet for communicating about abortion, here are some general tips:

• When in doubt, go back to basics. We can’t say it enough: abortion is safe, common, and essential health care. We give you permission to shout it from the rooftops, even!
• Check your assumptions. Be careful not to draw your own conclusions about why someone might choose to have an abortion — or how they feel about it.
• Be intentional about the language you use. Watch out for value-laden terms — and consider the implications when choosing words like “baby” or “fetus.”
• Aim for inclusion. All kinds of people access abortion care — including people of different ages, people who are already parents, people from different cultural backgrounds, and transgender and nonbinary people. Make sure the language you use is inviting and inclusive to all.

The bottom line: Abortion is safe, common, and essential health care. Using fact-based inclusive, non-judgmental messaging can go a long way toward erasing abortion stigma.

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Tweet about it: It’s more important than ever to communicate clearly about abortion. @CommunicateHlth revisits why abortion is essential health care and shares #HealthComm tips for reducing stigma: https://bit.ly/3MWpyd5 #HealthLit

If you’re like us, dear readers, you were thrilled to hear about the first COVID-19 vaccine to receive FDA approval last week. With the Delta variant causing COVID surges across the country, it’s certainly good timing for this important step.

This news has also really gotten us thinking about all things FDA approval. What exactly is an Emergency Use Authorization (EUA) anyway? What’s the practical difference between EUAs and full FDA approval? Will approval of the Pfizer vaccine help us move the vaccination needle among hesitant folks? There’s a lot to discuss!

That’s why we felt like this was the perfect opportunity to introduce a new series we’re starting here at We ❤️ Health Literacy Headquarters. Every so often, we’ll bring you a roundup of articles or other resources that caught our attention and sparked discussion among our team. Hopefully they’ll be of interest to you, too — and they might even help you communicate to your audiences about the latest health comm conundrums!

So without further ado, here’s some reading material on FDA approval and FDA approval-adjacent things — feel free to let us know your thoughts by responding to this email or tweeting at us!

• Emergency Use Authorization for Vaccines Explained (U.S. Food & Drug Administration)
  This explainer from FDA itself has some helpful details and framing about the ins and outs of EUAs, including a section at the end that outlines how experts were able to develop COVID-19 vaccines so quickly.

• The FDA Really Did Have to Take This Long (The Atlantic)
  This piece lays out what it calls a “fundamental tension” between access to lifesaving vaccines and the assurance of quality control. As the author states: “For full FDA approval to bring all the benefits it could, people need to trust that such approval means something.”

• Why Pfizer’s FDA Approval Matters and What It Means for Vaccine Mandates (NPR)
  This article starts by explaining how a drug gets FDA approval — then moves into tricky territory like the legal distinctions between EUAs and full approval, how approval might impact school and employer mask mandates, and the impact of Pfizer’s new status on vaccine-hesitant folks.

• Pfizer-BioNTech Coronavirus Vaccine Gets Full FDA Approval, Potentially Persuading the Hesitant to Get a Shot (Washington Post)
  Let’s keep talking — err, reading — about whether the approval of Pfizer’s COVID vaccine will persuade people who aren’t yet vaccinated and what it might mean for vaccine requirements!

• How the Messaging Around FDA Approval Could Boost COVID Shots (Axios)
  This piece by Drew Altman, president and CEO of the Kaiser Family Foundation, gives some insight into how people who haven’t gotten their vaccine yet might feel about the approval of Pfizer’s COVID vaccine. It’s important to note that Altman wrote this piece before Pfizer’s FDA approval, but we really ❤️ the emphasis of leveraging the approval to message about vaccine safety and efficacy.

Tweet about it: Check out @CommunicateHlth’s #HealthComm Headlines for a roundup of reading material related to FDA’s approval of the Pfizer #COVID19 vaccine: https://bit.ly/3gVBCOy