Category: We Heart Health Literacy

Happy Pride month, dear readers! Wait… is “happy” the right word? This year, Pride feels different — the events of the past few months lay a heavy blanket of grief and uncertainty over our celebrations. Instead of embracing progress and the incredible possibilities of a more inclusive, more just society, our country has taken what seems like a million steps back. Legislative efforts are threatening LGBTQ+ people’s identities, livelihoods, health, and human rights, with many of these efforts targeting transgender people. Life-saving research and programs that support LGBTQ+ health have lost funding. Meanwhile, leaders in the highest positions of power have shared harmful rhetoric and disinformation about trans people, emboldening others to do the same.

Whether they’re focused on research, health care, bathrooms, sports, or drag queen story time, all these attacks have a similar effect: They stigmatize LGBTQ+ identities and create barriers meant to erase trans people from public life. But throughout history, LGBTQ+ people have refused to be erased. They’ve fought for their right to exist, to live full lives as their full selves. Long before health equity became a popular term, LGBTQ+ people (like these public health heroes!) advocated for a world where everyone has the resources they need to be healthy. And now, even as the language of health equity is being stripped away from many public resources, the project of working toward a more equitable and accessible world continues.

So today, we’re highlighting 3 organizations that are working to defend the rights of LGBTQ+ people, support their health and well-being, and offer educational resources to help all of us become more informed and effective allies.

American Civil Liberties Union (ACLU)

With a record number of bills targeting the rights of transgender people, the ACLU has been at the forefront of court cases and campaigns to fight discrimination and protect trans people’s rights — like the right to receive gender-affirming health care. Supporters can easily sign pledges and petitions or send form letters to elected representatives on a number of civil rights issues. And people who’ve experienced discrimination because of sexual orientation, gender identity, or HIV status can fill out an online form to request legal assistance.

Advocates for Trans Equality (A4TE)

A4TE was founded in 2024 when 2 national trans civil rights organizations, the National Center for Transgender Equality and the Transgender Legal Defense and Education Fund, merged to “lead the next chapter of the transgender rights movement.” Along with taking on civil rights court cases on behalf of transgender and nonbinary people, A4TE maintains a resource library with information on a variety of topics affecting LGBTQ+ people — and resources to help allies get educated, like this Trans 101 guide.  

Brave Space Alliance (BSA)

In addition to the many great organizations advocating for LGBTQ+ rights on a national level, there are a multitude of orgs working at the local level, supporting LGBTQ+ people in communities across the country. One example is the Brave Space Alliance (BSA). An LGBTQ+ focused center on Chicago’s South Side, BSA is rooted in 4 “pillars of dignity”: health, housing, food, and identity. BSA provides important health services like behavioral health counseling, HIV testing, and referrals to care. Community building through peer support groups is equally as important to BSA’s mission as the free food pantry and housing services to help LGBTQ+ people who are experiencing food insecurity or housing instability.

The bottom line: As we honor Pride month, LGBTQ+ rights are under attack. But organizations like the ACLU, Brave Space Alliance, and Advocates for Trans Equity are supporting LGBTQ+ people in the fight for human rights and health equity.

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Copy/paste to share on social (and tag us!): In honor of #PrideMonth, CommunicateHealth highlights organizations that are working to help LGBTQ+ people thrive. Check it out: https://communicatehealth.com/wehearthealthliteracy/things-we-%e2%9d%a4%ef%b8%8f-organizations-that-fight-for-lgbtq-people/ #HealthCommunication #HealthLiteracy #HealthComm

Back in April, the National Institutes of Health (NIH) shared plans to create a national “autism registry.” Since then, it seems the project has evolved — instead of a registry, NIH and Centers for Medicare & Medicaid Services (CMS) will build a “data platform” to study the causes of autism. The main data source for this platform will be the private medical records of people enrolled in Medicare and Medicaid.

Despite the shift, disability and civil rights groups are still raising privacy concerns. Considering the dark history of autism research, it’s understandable that many autistic people and their families are worried about how their data might be used. Some people are canceling doctor’s appointments to avoid generating medical records related to autism — including parents and caregivers who’d previously scheduled autism evaluations for their children. That means people may miss out on diagnostic assessments, medical care, disability accommodations, and other support they need.

So this week, we’re thinking through some thorny questions around autism and government data collection. First of all — is there really a difference between a registry and a data platform? While “registry” tends to evoke a stronger gut reaction, at the most basic level, both terms describe a collection of information. What we call this data collection effort matters less than how it’s going to affect autistic people. That’s why we wanted to explore 3 questions that get at some key concerns.

Do people get a choice? Government-run registries and databases are nothing new. In fact, there’s already a National Database for Autism Research (NDAR). But NDAR is voluntary — autistic people and their families give consent to share their data to support autism research. Government agencies, private organizations, and health care facilities run dozens of voluntary registries to study diseases and recruit participants for clinical trials.

Seven U.S. states, on the other hand, have mandatory autism registries. These collect data in different ways, usually by requiring doctors to report each diagnosis. (An eighth state, New Hampshire, repealed its registry in 2024 due to privacy concerns.)

It’s not yet clear whether the new platform, called the Autism Data Science Initiative, will ask for consent or allow people to opt out of sharing their data. But since it will use existing government data sources, it’s unlikely that people will get a choice.

How will the platform protect personal information? The Health Insurance Portability and Accountability Act (HIPAA) says doctors and health insurance plans need your consent to share your health info. But HIPAA only protects “individually identifiable information.” If they remove all your personal details first (called de-identifying the data), they can share it without your consent.

NIH says the new platform will have “rigorous privacy protections,” which would mean de-identifying the data before sharing it with researchers. Here’s the bad news: by combining data from multiple data sets, it’s sometimes possible to re-identify private medical records. This lack of a true privacy guarantee makes the third and final question even more important.

How will the government use the information? The government has framed this data platform as a tool to help researchers identify causes of autism. But autism organizations have noted that the agency didn’t involve autistic people in the planning process. Listening to the diverse perspectives of autistic people and their families is key to building trust in research — and that dialogue hasn’t happened yet. In the meantime, many are concerned that the data could be misused to support the debunked claim that vaccines cause autism, perpetuate the harmful narrative of an “autism epidemic,” or focus on finding a cure for autism instead of helping autistic people live healthier lives.

The conversation isn’t over. Doctors, autism organizations, autistic people, and their families will need to keep asking these questions as plans for this platform take shape. As health communicators, we can do our part by encouraging our audiences to insist on clear answers.

The bottom line: Plans for an autism registry or data platform raise some serious privacy concerns — and we’ll all need to keep asking questions, together.

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Copy/paste to share on social (and tag us!): Wondering about the plans for a national autism registry or data platform? CommunicateHealth thinks through a few thorny questions: https://communicatehealth.com/wehearthealthliteracy/health-comm-for-the-current-moment-big-questions-about-an-autism-registry/ #HealthCommunication #HealthLiteracy #HealthComm

If you’ve been around in the health comm world for a while (or if you’ve opened a newspaper at some point during the past decade), you’ve probably noticed that there’s no shortage of health topics that inspire debate. These days, the spectrum ranges from topics as seemingly innocuous as fluoride in our drinking water to hot-button items like measles vaccination. As health communicators, we often find ourselves caught in the shuffle: Our job is to provide our audiences — all audiences — with accurate, science-based, and actionable information so people can make the best decisions for their health. But what if some of our audiences aren’t receptive to our usual messages and framing?

For today’s post, we’ve gathered 3 strategies on how to bridge the divide when communicating about divisive topics — we hope you find them helpful!

Focus on shared values. 

When faced with fundamentally different views of an issue we care about, it can be tempting to not just discount other opinions, but to discount the people who hold them as “bad,” “misguided,” or to shame them for their views and actions. But the truth is, shaming people never works. Instead, focus messaging on shared values.

For example, FrameWorks Institute’s research on talking about health disparities shows that across the political spectrum, most people share the idea of dignity as an inherent human right. So, say you’re communicating with a conservative audience about the importance of protecting LGBTQ+ people’s access to health care, you might frame your argument by saying “Treating people with dignity means making sure everyone has access to life-saving care.”

Check out more of FrameWorks’ research on how to talk about health topics!

Replace “trigger words.”

One of our favorite health comm tips is tailoring the language you use to your audience — and that’s never been more important than now. Many of the terms swirling around in public health conversations have become politicized, which means that they might elicit a strong reaction from your readers — and you might risk losing your audience’s attention before you even had a chance to make your point.

To mitigate this issue, try replacing “trigger words” and phrases with alternatives that describe the same concept, but aren’t as loaded with meaning. Here’s a few examples:

• Promote health equity > Give everyone a fair chance to be healthy
• Fight for environmental/climate justice > Protect our natural resources
• Misinformation > Rumor, falsehood, or incorrect information
• Social determinants of health > Factors outside of a person’s control that affect their health

Bonus point — these replacements are often more plain language!

Frame messages around individual benefit.

Traditionally, public health messages have focused a lot on the common good of measures like vaccination. While that argument may work for some, it doesn’t resonate as strongly for others. It can also be pretty abstract. When talking about potentially controversial topics, one strategy to try is highlighting how people can benefit personally — and making it as concrete as possible. For example:

• “Getting your kids vaccinated can mean less sick time away from school — and it can help schools stay open by preventing community outbreaks.”
• “Resting at home when you’re sick can help you feel better faster and get back to work, school, and other activities that are important to you.”
• “If someone close to you is using opioids, consider carrying naloxone — it might help you save a loved one’s life.”

The bottom line: As health communicators, our job is to create messages that can reach audiences across the social and political spectrum. And while we can’t control how our messages are received, we can shape how they’re delivered — and raise the chances people are ready to hear what we have to say.

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Copy/paste to share on social (and tag us!): Many health topics have become politicized — making it tricky to reach audiences across the spectrum of opinions. CommunicateHealth shares 3 strategies to help bridge the divide. https://communicatehealth.com/wehearthealthliteracy/health-comm-for-the-current-moment-bridging-the-divide/ #HealthCommunication #HealthLiteracy #HealthComm

Here at We ❤️ Health Literacy Headquarters, we’re always looking for ways to make content more accessible. One key way to do that: writing good, descriptive alt text. (We first wrote about this way back when in 2016).

In case you need a reminder, alt text — or alternative text, for long — describes images on a webpage or in a document, social media post, or email. Alt text ensures that the meaning and context of images are accessible to people with visual impairments who use assistive technology (like screen readers). But including alt text makes images accessible in other situations, too — like when a web browser fails to load images. What’s more, alt text is required by law for materials created by federal entities.

And while writing alt text might seem straightforward, we’ve found that that’s not always the case! That’s because:

• Context matters. The right alt text for an image depends on what you’re trying to say and who you’re trying to reach with your content. For example, in a material about getting enough physical activity, you could describe an image as “Two people playing basketball in a park.” But if the material is about something else — like the importance of social connection for teens — you might describe the same image as “Two teens playing basketball together at the park” to better support your content.
• Not every image needs alt text! By providing alt text, we aim to create an equivalent experience for people who can’t otherwise access the images. But for people who use screen readers, having to sift through alt text for every image on a page — particularly when the alt text is redundant with the page copy — can be burdensome. We like this resource from Nielsen Norman Group for determining which images need alt text.
• It can be hard to determine the right level of detail — particularly for complex images. When you’re writing alt text for a complex image, it can be tricky to provide enough detail to be useful without overwhelming the person reading the alt text. If you have a complex image with a lot of content — like an infographic or a chart — consider creating an accessible text version of your image content
• Describing identity takes care and sensitivity. There might be times where it’s relevant to describe aspects of identity — like race, gender, disability, or age — in your alt text. But knowing when it’s important to describe identity — and which terms to use — isn’t always straightforward.

So — how do we write good alt text? Here’s a few best practices we like to keep in mind:

• Keep it short. Shorter alt text can make for a better reading flow. Focus on what readers need to know about an image — and skip anything that’s “nice to know.”
• Don’t include redundant information. Review your drafted alt text alongside the main text to make sure you haven’t repeated anything.
• Include end punctuation. Be sure to end your alt text with a period, question mark, or exclamation point. Most screen readers will pause for a moment after punctuation, which makes for a more pleasant reading experience.
• If you’re using AI to generate alt text, be sure to review it. While AI can generate alt text quickly, keep in mind that it doesn’t replace a human’s judgment and reasoning. If you’re going to use AI to write alt text, allow time to review and adjust.
• Use identifiers with care. In general, describing identity in alt text matters most when you’re writing for a specific audience who you’re representing in your images. For example, if your material is for older Black adults, it probably makes sense to describe age and race in your alt text. If including identifiers in alt text is important for your content, take time to do your research on your audience’s preferred terms and choose inclusive language that will resonate with readers.

The bottom line: Including alt text is a key way we can make our health communication materials more accessible. By following best practices, we can make sure our alt text is useful, clear, and inclusive.

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Copy/paste to share on social (and tag us!): Writing good alt text is a key way to make health materials more accessible for everyone. CommunicateHealth shares some thoughts on how to write alt text that’s clear, useful, and inclusive. https://communicatehealth.com/wehearthealthliteracy/alt-text-revisited #HealthCommunication #HealthLiteracy #HealthComm

This week, we’re taking you back to school — or rather, to The University of Texas at Austin (UT Austin) for a chat with Dr. Mike Mackert. Mike is the director of the Center for Health Communication at UT Austin, where he trains students from a variety of health-related fields in how to be effective communicators. We got to pick his brain on the trends he’s seeing among future health communicators — and what we all can learn from them.

In recent years, the number of students who want to take Mike’s health communication courses has surged. Perhaps more surprisingly, most students who enroll aren’t studying a comms-related field — Mike notes that most of his students are preparing for a career in medicine, public health, or social work. “COVID was this fast-moving, complex, hard-to-crack health comm challenge. It led a lot of students to realize what health communicators have known all along — that the way we talk about health issues matters.”

In Mike’s class, students learn the foundations of successful communication. They also learn to embrace a new way of thinking about how to motivate people to change their (health) behavior. “Many students start the class wanting to ‘educate’ people into doing the right thing,” Mike says. If COVID has taught us anything, it’s that this approach has limitations. “In my course, I try to help students understand what actually motivates behavior change. You have to know your audience, meet them where they are, and understand the role of theory and evidence.” (For a refresher on health comm theories, check out our Useful Theory series!)

Another important skill Mike tries to teach his students is a willingness to critically examine their own ideas — and to pivot if the data ends up pointing in another direction. “It’s important for them to learn to be okay with being wrong and to not get too attached to an idea,” Mike says. “Students might come up with ideas they think are really great — but when we test them with the intended audience, we might find they don’t land as well as we thought.” In other words: he’s teaching students that following the evidence — and the audience’s lead — helps them do better work.

We asked Mike if he’s noticed any trends in how his students approach health comm challenges. He notes that today’s students seem to be much quicker to embrace the idea of audience segmentation — focusing communications on a specific, narrow subset of your audience. “Students really seem to drive a focus on hyper-local, hyper-targeted communication,” Mike says. “They’re willing to accept that doing a great job at reaching one specific audience is often more impactful than trying to reach everyone.”

In his class, students get the opportunity to try out their ideas in real-life scenarios. For example, students designed a campaign to educate their peers about overdose prevention and promote Narcan (a medicine to reverse opioid overdoses) on campus — and implement stages of the campaign over time, from raising awareness to addressing students’ concerns and barriers. Teaching tomorrow’s health professionals about the power of audience-focused messaging — what’s not to ❤️ about that?

But Mike and his team at the Center for Health Communication don’t stop at educating students. To bring their content to a broader professional audience, they’ve created the Health Communication Training Series — a collection of (mostly) free, snack-sized courses on a variety of health-related communication topics. The best part? These courses are open to anyone! And for those looking to take a deeper dive into the health comm issues of the day and network with other like-minded folks, the Center hosts the Health Communication Leadership Institute, a yearly in-person workshop. “This year’s workshop will include a program focused on both leadership development and health communication best practices,” Mike says.

The bottom line: Clear, actionable, and effective health messages are more important than ever. The good news: Institutions like UT Austin’s Center for Health Communication are educating tomorrow’s (and today’s!) health communicators to be ready to take on any challenge!

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Copy/paste to share on social (and tag us!):This week, CommunicateHealth sat down with Dr. Mike Mackert from @UTAustin’s Center for Health Communication to chat about educating tomorrow’s health communicators. Check out this conversation: https://communicatehealth.com/wehearthealthliteracy/voices-from-the-field-mike-mackert-ut-austin/ #HealthLiteracy #HealthComm

Picture this all-too-common scenario: Your doctor orders some routine blood tests at your annual checkup. So, you pop down to the lab, roll up your sleeve, and forget all about it… until a day or so later, when you get an alert from your patient portal. You log in and promptly start to panic. Oh no! Your XYZ is too low! Your ZYX is too high! You are clearly dying!!!

You call up your doctor. Why didn’t they notice at your appointment that you were mere moments from death, as these test results reveal? Pish posh, the doctor says. Tut tut. We don’t worry about XYZ results until it’s much lower than that. And that ZYX test — why that could’ve been thrown off by an overly large breakfast. Everything is completely fine!

Thanks to a 2016 law called the 21st Century Cures Act, patients now have immediate, unfettered access to their own health information. And that can be a good thing! But it also means people can get some pretty alarming info in their inboxes, sometimes before their own doctor has seen it.

For example, imagine that the results in your portal show that you may have cancer or another life-altering illness. And they arrive at 5 p.m. on a Friday, just as the doctor’s office closes. That’s a recipe for one very sleepless weekend. So, how can health communicators help doctors and patients navigate this situation?

Try these tips the next time you create materials about test results.

Explain the reference range. We’ve written before about a better way to communicate positive and negative test results. For results that use a reference (or “normal”) range, explain that labs set the range based on results for a group of healthy people. But they don’t capture the full range of possible results. So, the key thing to remember is that being outside the range doesn’t always mean you’re sick, and being inside the range doesn’t always mean you’re healthy. The best way to understand results is to talk directly with the doctor who ordered the test.

Provide a guide to complicated results. If you’ve ever read a pathology report, perhaps you’ve been offended by a reference to your insides called a “gross description.” Patients might be relieved to know that the pathologist is not, in fact, disgusted by their innards — this just means a general description of the tissue sample before they put it under a microscope. So, when the results go beyond a number on a range, provide a guide to what the results will look like and explain key terms patients need to understand.

Encourage doctors to set clear expectations. Before any blood gets drawn or samples taken, the patient should understand the purpose — and limitations — of the test. Will the result give a clear diagnosis? Is it just the first step to rule something out on the way to an answer? What’s the chance of a false result? How long will the results take, and how will the doctor follow up? This kind of level-setting is especially important when testing for a serious or sensitive illness, like cancer or a sexually transmitted infection.

Share some self-advocacy scripts. Even the best health education materials are no substitute for a clear conversation between doctor and patient. And doctors are often ordering tests in a hurry. So help support patients in getting the information they need by sharing these scripts.

• “Do I need to prepare before the test?” Some tests require fasting for a certain amount of time, but that’s not the only thing that can affect results. Encourage patients to ask if they need to change their routine leading up to the test — and to make sure their doctor knows all the medicines, vitamins, and supplements they’re taking.
• “What’s a normal result for me?” Labs often use different ranges based on things like age, sex, and pregnancy status. But lots of other factors like health conditions, activity level, and even geographic location can affect what’s “normal” for a specific person. So, encourage patients to ask their doctor what’s normal and healthy for them. That way, they’ll know what to expect before they see a result marked too high or too low.
• “When will you contact me about the results?” Doctors can’t always contact patients before results appear online. But patients can make a plan with their doctor for how they prefer to receive the results. For example, a doctor might agree to call or send a message within 2 days after the results arrive. That way, patients can decide if they want to look at the results on their own or wait to speak with their doctor directly.

The bottom line: Test results can be confusing, so explain what to expect from different tests — and encourage doctors and patients to have a conversation before heading off to the lab.

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Copy/paste to share on social (and tag us!): How can we support patients in the era of instant online test results? CommunicateHealth offers some tips: https://communicatehealth.com/wehearthealthliteracy/tips-for-talking-about-test-results #HealthCommunication #HealthLiteracy #HealthComm

It’s National Infant Immunization Week (yay)! To celebrate, we interviewed Dr. Michelle Fiscus, Chief Medical Officer at the Association of Immunization Managers (AIM). Dr. Fiscus helps inform AIM’s products, strategies, and policies to “establish a nation free of vaccine-preventable disease” — and on top of that, she’s a board-certified pediatrician with more than 30 years of experience.

Vaccination — especially childhood vaccination — is one of the greatest success stories of health care and public health. For Dr. Fiscus, it’s easy to see why: “We don’t see families having to have 10 kids anymore because half of them might die from whooping cough and other vaccine-preventable diseases.” Yet, on some level, the massive success of widespread vaccination has allowed vaccine hesitancy to take hold in recent years. “We don’t see the devastating effects of certain diseases anymore,” Dr. Fiscus explains. “Not long before I began my medical training, our emergency rooms were full of children suffering from meningitis as a result of Hib (Haemophilus influenza type b) infection.” Since the Hib vaccine became available in 1985, cases of the disease have dropped by 99 percent in the U.S.. Many other childhood diseases saw similar drops in cases once vaccines became broadly available.

For many of us, this data tells a clear and compelling story. But vaccine communication and vaccine uptake still face persistent challenges. Dr. Fiscus has 5 actionable strategies to help health communicators move the needle:

• Don’t underestimate the “movable middle.” “Very few people are truly anti-vaccine,” Dr. Fiscus says. “Everyone else is on a spectrum of acceptance.” People have different levels of questions and concerns about vaccination — and when we address the issues they care about, they’re more likely to be receptive. Dr. Fiscus reminds us to focus on common ground and shared purpose, especially when it comes to childhood vaccination. “The vast majority of parents are trying to do what’s in the best interest of their children,” she says. “We are too — we’re just coming at it from different perspectives.”
• Partner with trusted messengers. When people have questions or doubts, trust becomes that much more important. “Make sure that people are getting your messages from someone they can identify with,” Dr. Fiscus says. That might be their doctor, a community or religious leader, or even someone who lives in their area or shares common attributes or interests.
• Use data to draw comparisons. As public health folks, we know vaccines are the best option we have to prevent certain diseases. But we also know that simply presenting the facts — even if we have the data to support them — isn’t enough to change many people’s minds (or behaviors). Instead, put the data in perspective: “Across the lifespan, there’s only a 1 in 150,000 chance that you’ll get killed by lightning — but no one would let their kids play outside in a thunderstorm,” Dr. Fiscus says. “But there’s a 1 in 500 chance that a child with measles will die from the disease. Yet some of us are willing to take that risk. That’s where data can be helpful in pointing out the difference in perceived risk.”
• Tap into the power of storytelling. “Real stories resonate with people who are questioning,” Dr. Fiscus says. “Maybe they’ve heard that someone they know, however far removed, had a bad reaction or developed a health problem after getting a vaccine. That one anecdote might carry more weight than a doctor giving them a statistic.” To match the emotional weight of an anecdote, health communicators need to tell our own stories. “We need to humanize the science,” Dr. Fiscus says. “For example, when I was in practice, I took care of a perfectly healthy 8-year-old who died of complications from the flu. That was a child who lived in my town, a child with a name and a family.”
• Draw parallels to non-vaccine related situations. “A lot of what we’re fighting right now is medical freedom vs. public health. Personal freedom vs. what’s right for your community,” Dr. Fiscus says. COVID-19 showed us that the idea of getting vaccinated to keep others healthy can be a hard sell. To bolster that argument, we can compare vaccines to widely accepted social norms and laws designed to protect everyone. “In reality, there are a lot of things that the government tells people they can’t do. You’re not allowed to drive drunk — because doing so could kill you, but also because it could kill someone else,” Dr. Fiscus points out. “Yet we don’t see a lot of advocacy around removing drunk driving laws.” Drawing these parallels might encourage people to stop and think.

None of these strategies are likely to convince a person with strong anti-vaccine sentiments. But remember, most people are somewhere in the movable middle — and if we can combine effective health messaging with other important strategies, like communicating with empathy, we can make an impact.

But in this destabilizing moment, Dr. Fiscus’ most important message for health communicators might be this one: “Don’t give up. We’re watching in real time as many of the public health advancements we’ve worked for are being dismantled — but remember that this won’t last forever. This period we’re in right now, in the arc of a lifetime, is really just a blip. We will get past it. We need to keep doing the hard work, try different things, and learn as much as we can — so that whenever we find a little crack in the door, we can get in and start to make a difference.”

The bottom line: We’re constantly challenged to build vaccine confidence and counter mis- and disinformation — but by combining effective messaging with empathy, health communicators can help to increase vaccine uptake. And we’re so thankful organizations like AIM are here to help guide us.

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Copy/paste to share on social (and tag us!): This week, CommunicateHealth talked with Dr. Michelle Fiscus at @AIMimmunization about vaccine communication strategies that work. Check out our conversation: https://communicatehealth.com/wehearthealthliteracy/voices-from-the-field-dr-michelle-fiscus-association-of-immunization-managers/ #HealthLiteracy #HealthComm

A few weeks ago, CDC announced plans to study whether vaccines cause autism. This theory isn’t new — in fact, it’s contributed to vaccine hesitancy for decades. Back in the 90s, gastroenterologist Andrew Wakefield published a fundamentally flawed study linking autism to the measles-mumps-rubella (MMR) vaccine. In the decades since, researchers have identified a complex web of potential causes of autism — and hundreds of rigorous studies have shown no link between autism and vaccines. 

Here at We ❤️ Health Literacy HQ, we’ve shared plenty of tips and resources to help health communicators address mis- and disinformation. But during Autism Acceptance and Awareness Month, we want to focus on how this particular myth has harmed autistic people and their families — and what health communicators can do to help.

Wakefield’s infamous study was published at a time when autism diagnoses were on the rise, and the idea of an “autism epidemic” took shape. It’s understandable that many people wanted to identify a cause for autism — especially parents and caregivers of autistic children, who faced (and continue to face) many challenges. But the epidemic narrative reinforced stigma and ignored some important facts. As our understanding of autism has grown, diagnostic criteria have evolved, which makes it hard to compare autism rates across time. What is clear is that autistic women, transgender and nonbinary people, and people of color have historically been underdiagnosed, but that diagnostic gap is narrowing as more people get access to autism assessment. And as autistic people from underrepresented communities share their stories, they’re shifting cultural narratives about what autism looks like.

From this perspective, an increase in autism diagnoses is a good thing, because it means more people can access resources, support, and community. But the anti-vaccine movement continues to use autism as a bogeyman to cultivate fear and skepticism. The ableist implication is that it’s better for a child to risk catching a vaccine-preventable, potentially deadly disease than to be autistic.

In addition to promoting vaccine hesitancy, which can lead to devastating consequences like the recent measles outbreaks, this narrative has inspired dangerous pseudoscientific products that claim to treat or cure autism. It also echoes harmful messages many autistic people receive throughout their lives — that their natural ways of thinking, communicating, and moving through the world are undesirable or “less than.”

Looking at the big picture, the conversation about vaccines and autism takes attention away from systemic issues that disproportionately affect autistic people, like housing insecurity, unemployment, and discrimination in health care. And some advocates argue that time and money could be better spent on helping autistic people live healthier lives. By leading with empathy for autistic people and parents and caregivers who are impacted by stigmatizing anti-vaccine messages, health communicators can help change the narrative. Here are a few ways to start:

• Avoid “autism epidemic” messaging. If you’re writing about the prevalence of autism, present the numbers without value judgments.
• Speak up about harmful policy decisions. For example, many autistic people and their families will lose critical support with the elimination of the Administration for Community Living (ACL).
• Take a strengths-based perspective. To counter stigmatizing messages, highlight strengths while acknowledging challenges that autistic people experience.
• Support curiosity. If parents and caregivers have questions about autism and vaccines, encourage them to talk to their child’s doctor. You can also invite them to…
• Learn from autistic adults with different perspectives and experiences — and amplify their work! We ❤️ how organizations like the Autistic Women & Nonbinary Network and Learn Play Thrive center autistic lived experience and expertise.

The bottom line: The discredited idea of a connection between autism and vaccines is making headlines again, but health communicators can help change the narrative.

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Copy/paste to share on social (and tag us!): Challenge stigmatizing messages about autism and #vaccines with tips from CommunicateHealth: https://communicatehealth.com/wehearthealthliteracy/health-comm-for-the-current-moment-changing-the-narrative-about-vaccines-and-autism #HealthComm #HealthCommunication

New health comm resource alert! Our friends at the de Beaumont Foundation recently published Communicating About Public Health, a toolkit to help public health professionals build understanding of the field among the people they serve. We’re proud to share that CommunicateHealth supported this timely project! For today’s edition of Voices From the Field, we chatted with Mark Miller, de Beaumont’s Vice President of Communications, about key takeaways from the toolkit — and how we can apply those lessons to some of the biggest challenges health communicators are facing today.

Quick question: What is public health? If you don’t have an answer on the tip of your tongue, dear reader, you’re not alone. When Mark Miller arrived at the de Beaumont Foundation in 2018, he quickly recognized that public health professionals needed accessible language to explain the work they do. The lack of clear, consistent messaging about public health made it harder for professionals to build understanding, support, and trust with the people they serve. “To trust and support something, you first have to understand what it is,” Mark says. “At the de Beaumont Foundation, a big part of what we do is helping people communicate more effectively about what public health is and why it matters.” And that task has become more complex over the past few years. The field was thrust into the spotlight during the COVID-19 pandemic, Mark notes — and in the aftermath, “many people are starting with not just a lack of understanding, but negative impressions and emotions.”

Last year, the de Beaumont Foundation teamed up with CommunicateHealth to create Communicating About Public Health: A Toolkit for Public Health Professionals. The toolkit builds on years of de Beaumont’s message testing work before and during the pandemic — and it’s grounded in new research that de Beaumont and CommunicateHealth conducted with more than 1,600 U.S. adults in 2024. Communicating About Public Health features messaging to help public health pros address 5 key knowledge gaps or misconceptions about the field. The goal is to build understanding of public health through everyday conversations and written communication. “The toolkit helps professionals connect the dots between issues that they’re dealing with at the moment — like a disease outbreak or a food safety issue — and the broader goal of public health,” Mark explains.

Communicating About Public Health also offers practical strategies to help pros tailor messages for specific audiences. At the beginning of the pandemic, there were a lot of efforts to educate people living in low-income neighborhoods and communities of color, Mark says, and the de Beaumont team identified the need to connect with politically conservative audiences, including people living in rural communities. As part of an effort to build confidence in COVID-19 vaccines across the political spectrum, the de Beaumont Foundation collaborated with GOP consultant and pollster Frank Luntz to learn about conservative audiences’ values and beliefs. While presenting this work at a Society for Health Communication event, Mark asked attendees: “When you think about health equity, how many of you think about political affiliation or rural communities?” It’s a thought-provoking question worth revisiting. “In public health, we often talk about meeting people where they are,” Mark says. “That’s critically important, and we need to approach that in an even broader way.”

If there’s one thing we learned from the COVID-19 pandemic, it’s the value of acknowledging uncertainty. During uncertain times, it’s especially important to be upfront about what we don’t know. Mark also encourages health communicators to empathize with people’s genuine curiosity about topics like vaccination. “In our research during the pandemic, an approach that worked well acknowledged the importance of personal choice,” Mark explains. “For example, try using language like: ‘It’s natural for people to have questions. I want to try to answer your questions so you can make the best decision for you and your family.’”

With all the transitions and disruptions we’re experiencing, Mark advises health communicators to get back to basics. “Remember what drew you to this work,” Mark says. “Focus on those important goals — and seek new ways to accomplish them.” In unpredictable times, that’s a lesson all communicators can embrace.

The bottom line: Mark Miller and his team at the de Beaumont Foundation know that building understanding of public health is a key step toward building trust. Check out Communicating About Public Health for messages to help you build understanding of public health in your community!  

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Copy/paste to share on social (and tag us!): This week, CommunicateHealth chatted with Mark Miller at the de Beaumont Foundation about Communicating About Public Health: a helpful new toolkit for #PublicHealth pros. Check out our conversation: https://communicatehealth.com/wehearthealthliteracy/voices-from-the-field-mark-miller-de-beaumont-foundation #HealthLiteracy #HealthComm

Monday is Transgender Day of Visibility — a day when we celebrate the lives and contributions of trans and nonbinary people, amplify their voices, and honor their victories. It’s a day to acknowledge the strength and power of the trans community while also having honest conversations about the factors — like discrimination, stigma, and violence — that have required trans people to develop such resilience and courage. These factors affect health and well-being just as much as medical concerns (for example, trans people have higher rates of conditions like HIV/AIDS and mental illness).

But here’s the problem: We don’t always have the data to fully see the impact of any of these realities. Many public health surveys and studies ask participants to identify either their sex (a biological construct) or their gender (a social construct), but not both. This approach makes it almost impossible to fully understand the experiences of trans and nonbinary people. And when public health data fails to include a population (or when a population is erased from public data sets), that population is left out of research findings, policy decisions, and health care services.

So, what can we as health communicators and researchers do? We can start by doing our best to make sure our trans and nonbinary community members are visible. And although we don’t have all the answers, we do have a few suggestions.

• Use the two-step method to gather sex and gender information on surveys. It asks participants to name both their current gender and their sex assigned at birth. This approach helps make trans and nonbinary people visible in data — and when people are visible, public health programs can better meet their needs.
• Partner with trans people. In short, when trying to learn about a population, team up with them. One term for this is community-based participatory research (CBPR) — it’s a collaborative approach that directly involves communities in study design, data collection, and analysis. (Check out Howard Brown Health’s guide to CBPR for trans and nonbinary health!)
• Partner with community-based organizations that serve trans populations. These organizations bring lived experience, trust, and deep connections that can help ensure research is respectful, relevant, and actionable.
• When trans data is deleted from public data sets, link to new data. It may not always be possible to find a one-to-one replacement, but do your best. For example, U.S. Trans Survey may be an option for some public health-related data, The Trevor Project can provide data related to mental health in LGBTQ+ young people (and segments some data by gender identity), and this survey of trans adults includes categories on discrimination, mental health, and accessing health care. And if the information you’re linking to isn’t the perfect fit for the information that was deleted, consider explaining why. After all, a key part of supporting equity is advocacy — and when we call out attempts to erase the presence of trans people, we continue to advocate for and support trans visibility.
• Prioritize inclusive language. This almost goes without saying — but now more than ever, choose language that reflects trans people’s identities and experiences and conveys respect to everyone. Check out our Inclusive Language Playbook for actionable tips!

The bottom line: When trans people are left out of data, they’re left out of health care — and that perpetuates and deepens disparities. Inclusive approaches to collecting gender information and population research are vital to honoring the experiences and addressing the needs of trans people.  

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Copy/paste to share on social (and tag us!): Celebrate Transgender Day of Visibility with these tips about inclusive data: https://communicatehealth.com/wehearthealthliteracy/on-transgender-day-of-visibility-lets-talk-about-inclusive-data-in-public-health/