Misinformation, Miscommunication, and Misunderstanding: Why HCPs are Losing the Patient Education Fight

Before you start telling me about all the diabetes medications you want me to take, let me tell you that I’m not, because I don’t have diabetes. It’s not a direct quote, but it’s quite close and completely captures the spirit of the statement directed toward me, a 4th year pharmacy student at the time. The patient — let’s call her Bee — had been newly diagnosed with type 2 diabetes and was referred to our pharmacist-led diabetes clinic for treatment.

Clearly, Bee was less than thrilled.

Feeling compelled to get to the bottom of this misunderstanding, I asked Bee if her physician had actually explained to her why she received a diabetes diagnosis. She said no, and when I offered to explain she was willing to hear me out.?

For the next 7 or so minutes, I walked Bee through her chart and explained what an a1c is and what it represents, discussed her specific a1c, and helped her connect the dots to understand how it all contributed to her diagnosis. I also spent a significant amount of time discussing the prevalence of diabetes in Black communities and the importance of managing blood sugar levels as optimally as possible to prevent serious complications. And we both shared about our families' experiences with the condition.?

At the end of those 7 minutes, Bee was ready to discuss her treatment plan. Before she left the clinic, she expressed her appreciation for me “sticking with” her and not writing her off.

Enter a room full of health professions students and ask them to raise their hands if the main reason they went into health care was to educate patients. I’d venture to say a significant number would raise their hands.

Now enter a room full of healthcare professionals who are actively practicing in the workforce?and ask them whether patient education is prioritized in their roles. I’d imagine we’d see much fewer hands raised.

Here’s the thing: healthcare is losing the patient education fight because patient education is a priority in theory but not nearly as much in practice. And the reasons for that are multitudinous.

We can’t solve the patient education and health literacy problems without addressing the core trust issues that exist between the public and the healthcare system — trust issues largely stemming from misinformation, miscommunication, and misunderstanding.?

It’s true that trust in public health has dropped in recent years, relatively speaking. But it’s also true that in absolute percentage points, trust in public health remains high. This tells us that there is hope. But it will take deep, lasting change in the ways we interact with and educate patients to turn this ship around.?

While Part One of this essay will explore several (though not nearly all!) the reasons trust has declined, Part Two helps clinical healthcare providers like you reimagine patient education through a refreshing take on an undervalued, underutilized tool that you can apply in any clinical setting and any type of patient interaction.

Here’s the thing: healthcare is losing the patient education fight because patient education is a priority in theory but not nearly as much in practice.

Textbook Patient Education vs. Patient Education in the Wild

Patient education will never go out of style. But the formal healthcare system’s approach to patient education almost certainly will.

In healthcare, when we talk about patient education, we could be referring to a variety of formats and methods of delivery: written materials patients get when they pick up a prescription or leave a physician’s office; informational videos they may watch in a waiting room; verbal conversations they have with a pharmacist or nurse prior to discharge from a hospital; etc.

Left out of the conversation (and the research) all too often is the additional information patients get alongside their more formal patient education — information that isn’t always supplementary or complementary, but is often contrary to their provider’s instructions or advice. This informal education could take the form of conversations with family and friends, TikTok rabbitholes, secondhand accounts of what happened to someone else, and the list goes on.?

Somewhat surprisingly, Edelman’s 2023 Trust Barometer indicates that people’s trust in their friends and family to provide accurate health information is now at the same level as their trust in medical experts to do so, up 11 percentage points from March 2022 to March 2023.

That's...kind of wild.

Many of these respondents also admit to following advice from friends and family and advice from social media that contradicted their doctor’s advice.

On the flipside, there’s also information that tends to be more reliable and complementary to what patients may hear from their providers, yet remains unaccounted for in our formal definition of patient education. A great example is a high quality article from a reputable health company that a patient may come across via Google search.?

None of these sources — positive, neutral, or negative — fit neatly into our established perceptions of patient education in healthcare.

So it begs the question: how are we really capturing what patient education means…to patients? How can HCPs continue to be the go-to health education experts if we’re not educating patients in the ways they value it most?

While HCPs are well-equipped to inoculate against and correct misinformation through patient education efforts, we must admit that in a post-pandemic, social media-driven world, we run the risk of no longer being well-positioned to effectively educate patients because of declining trust in the public health and healthcare system.

And as HCPs, we are very much a part of that system, which means we have to work on an individual level to restore and increase trust.?

Specifically, these are 3 core trust issues that must be addressed and solved for in order to optimize patient education efforts:

1. Misinformation, disinformation, and disillusionment
2. Miscommunication, including linguistic barriers and poor communication practices
3. Misunderstanding, including perspective blindspots, biases, and assumptions

Trust Issue #1: Misinformation, disinformation, and disillusionment

Trust is the foundation of any strong relationship, which ironically explains why the relationship between patients and the healthcare system leaves much to be desired.?

Understandably, entire communities are disillusioned with the healthcare system. Historically and in the present day, they’ve directly and/or indirectly experienced being simultaneously undervalued and exploited by said system.?

That disillusionment breeds a lack of trust, exposing cracks and gaps that bad actors capitalize on and use to infiltrate communities with misinformation and disinformation. While these phenomena often get lumped together, there are important differences between the two. And as a healthcare professional, it’s important to take note of which is happening.?

Misinformation is usually benign, though not necessarily harmless. It’s like when your well-meaning grandma would tell you old tales that sounded true but probably weren’t. For instance, my Grama would tell me I’d catch pneumonia if I walked out into the cold without a jacket on or “with [my] chest out.”?

Is it true? Not really. Is it an idea spread with malicious intent? Also, no.

...disillusionment [with the healthcare system] breeds a lack of trust, exposing cracks and gaps that bad actors capitalize on and use to infiltrate communities with misinformation and disinformation.

Disinformation, on the other hand, is intentionally spreading misinformation with malicious intent and often through complex, deliberate campaigns. Entire communities can be and are targeted with disinformation.

Both result in potential for public harm and both require HCPs to be experts at addressing, debunking, and inoculating against it using our stellar communication skills.?

But herein lies the problem: as an industry, our communication skills aren’t so stellar.

Trust Issue #2: Miscommunication: Linguistic barriers and poor communication practices

A second contributor to trust issues between patients and the healthcare system is that often, we as providers aren’t speaking the same language as patients. And I mean that both literally and figuratively.?

Obviously it’s quite challenging to cultivate trust with a patient if you don't speak their language (or have access to a translator who can assist with the conversation), provide materials in their language, etc. This is a basic, elementary principle of communication.

But even when HCPs do share the same language, we're often speaking in a much different way than a patient is able to or comfortable with communicating.?

I get it — we’re used to a certain type of academic, scientific dialogue in healthcare. We read and analyze journal articles for a living. We attend continuing education sessions and medical conferences to stay fresh. We engage in debates over medical evidence for funsies (and for optimal patient care, of course).? It can be difficult to even notice the linguistic bubble we’re in — let alone step outside of that bubble to communicate with someone who rarely, if ever, lives in that space.

But even when we think we’re educating patients in a way that’s understandable to them, there’s much left to be desired.

Many HCPs I work with on their journeys to become health content writers say they enjoy patient education and would describe themselves as pretty experienced at making complex ideas simple for patients. And that’s probably true on some level since they’re verbally communicating scientific information to patients often.

But when they confront the task of writing their first educational blog posts — after learning about the core principles of plain language, compassionate communication, and storytelling — they often realize just how much room for improvement there is. And sometimes they freeze in the realization of just how hard it is to really communicate at a level patients can appreciate and absorb.

There’s evidence to show that patients immediately forget up to 80% of medical information an HCP shares with them. And of what they do remember, half of it is remembered incorrectly.

Communicating well isn’t optional; it’s essential for individual patients’ health and for public health overall.?

Trust Issue #3: Misunderstanding: Perspective blindspots, biases, and assumptions

There’s another consequence of spending lots of time inside our academic and/or clinical bubbles. We’re unable — and even unwilling — to adopt the perspective of a patient. Patients have their own knowledge, assumptions, and beliefs. And oftentimes, these run counter to our own.

Here’s where empathy comes in. And while you may have heard empathy described as “putting yourself in someone else’s shoes", that’s complete BS. It offers no value to put on someone else’s shoes but to still see their actions, beliefs, and behaviors through your own knowledge, perspectives, and experiences.?

Rather, empathy is recognizing that someone’s perspectives and experiences may be different from your own, yet still being able to imagine and accept how these perspectives and experiences may influence their thoughts about or outlook on the world.

Empathy allows us to predict what objections patients might have or what barriers to care they may face, what preconceived notions they might believe, what values they hold...

This knowledge matters because we must account for our patients’ perspectives and beliefs in order to deliver patient education that’s not only accurate, but relevant and actionable.

The problems of misinformation and disinformation, coupled with gaps in our shared language and perspectives create a weak base for HCPs to be able to effectively promote behavior change through patient education with the public.

In Part Two of this article, we discuss one undervalued and underutilized solution to these 3 core trust issues. Read on!

If any part of this essay resonated with you, share it with a healthcare friend or two, and let me know which trust issue shows up most in your experience.