A Call for Plain Language in Medicine: My Story

Lack of plain language can lead an audience down the wrong path. That’s at best. At worst, it can endanger the audience. Somewhere in between, a lack of clear, plainly stated communication can cost both the conveyer and the receiver time and money.

My recent breast cancer scare shows how poor communication from otherwise compassionate, dedicated professionals can have negative effects. Their lack of clarity strained my family’s resources and relationships. The circumstances under which I received that information left me traumatized.

No, I don’t have breast cancer—as far as I can determine.

But for an excruciatingly long time, I haven’t known for sure. Here’s what happened, what I learned, and what could have helped.

My New Identity: High-Risk Patient

My journey began in early March 2023 with a routine mammogram at the local women’s clinic, where I had been a patient for 20 years. I want to say the journey lasted until October 2023, but, in truth, it continues. I record my story to date here.

Forgive the overshare. Skip to the later sections about plain language if you want. And please note that I am not a medical professional.

The day after my mammogram, the clinic posted a letter to my account with our local healthcare network. It suggested a “finding” would require “further evaluation.” It then recommended “additional imaging diagnostic mammogram – left.” Huh? I wondered if I read that sentence backward, it would make more sense.

Irritatingly, I could find no explanation for the mysterious “finding.” Instead, the letter contained a strange new paragraph about dense breast tissue. It plainly stated (thankfully) that while “dense breast tissue is not abnormal,” the density “can make it harder to evaluate the results of your mammogram.”

OK, so I am a card-carrying member of the women-with-dense-breast-tissue population. I knew that already. Every mammographic technician I had ever spoken to had told me so.

So, what had changed? Well, two things, neither of which was in my control.

The Dense Breast Club

One clue—if you could call it that—lay in the radiologist’s report, which was also posted to my account. “There are calcifications in the lower inner left breast at mid-depth.” No idea what that meant. So, like thousands of other U.S. patients, I googled the terminology. I found that breast calcifications—micro-calcifications—are concerning only if they follow a linear or branching pattern, and even then, they might not indicate cancer.

The report didn’t tell me that.

Clue number two emerged when I googled “women with dense breast tissue” and similar terms. Turns out half the women over 40 in the U.S. share that identity with me. What had changed – on March 10, 2023 – was an FDA clarification on mammographic quality and patient guidance for women with dense breasts. Our “dense breasts have been identified as a risk factor for developing breast cancer.”

The terms “risk factor” and “breast cancer” scared me. But again, I could find no specifics about that risk.

Nearly three weeks after my routine mammogram, I went for a diagnostic mammogram at the brightly lit Breast Diagnostic Center on my healthcare network’s sprawling campus nearby. Beyond the twelve many-lockered dressing rooms was a maze of equipment-filled rooms and offices.

My experience there was no different from that of a routine mammogram. It just came with a larger machine. But the results were more specific…sort of….

Tests and More Tests

Yep, my micro-calcifications were linear. Or so I deduced from the dense (pun intended) language at the end of the radiologist’s report, dated the same day. “These demonstrate linear possibly branching morphology,” it said. I shuddered at the word “morphology.” Its root word is “morph,” which means “form,” but it carries connotations of monsters for me, thanks to Greek mythology and “The Matrix” movie character Morpheus.

This particular monster demanded more testing—specifically a needle biopsy.

Two weeks later, I wept as I lay face-down on a medical testing bed while a surgical team—working underneath me—performed a needle biopsy of my left breast. I was terrified that I was about to find out that I had breast cancer. Sitting alone in the waiting room, my husband was equally on edge. His mother had died of metastatic breast cancer three years after we married.

I greeted the biopsy result report with tears, too. My brother had suddenly died while visiting his children in another state, and we were planning his funeral. Wracked with emotions, I tried to decipher the biopsy report. In all caps, the report listed “flat epithelial atypia” as a result but also listed “no features for diagnostic malignancy.”

My relief was mixed with confusion. What did “flat epithelial atypia” mean in English? Again, I turned first to Dr. Google, but then I scheduled an appointment with a real person—a surgeon—for further interpretation. The term “atypia” means “not normal,” and “flat epithelial” refers to the shape of a particular kind of cell in the breast (near the ducts). The condition, while not concerning itself, could possibly be a precursor for cancer down the road. Or not. The surgeon did not recommend surgery unless I wanted it.

Sigh. Here’s where I entered a state of limbo and where I remain today.

To date, I’ve had multiple diagnostic mammograms, another needle biopsy, two breast MRIs, and genetic testing for the two BRCA genes. (I don’t have either gene, thankfully.) The biopsy again found “atypical” growth, this time in the form of “lobular hyperplasia.” Again, I consulted Dr. Google and the surgeon for an interpretation. Again, the surgeon did not recommend surgery unless I wanted it.

My genetics counselor’s response after finding I had no markers for cancer was, “Huh, I wonder what’s going on with you?”

Me, too.

The Question at the (Sort of) End

In total, my 15-month (as of now) journey through multiple medical tests and interpretive appointments—all with indeterminant results—cost me nearly $2000 US. (That was my out-of-pocket expense after my healthcare insurance paid the larger portion.) The personal toll, however, was immeasurable. Not only had I buried a brother, but I had also lost the thread of my career and struggled to find common ground with my friends.

Yes, I know that many people would gladly pay all of that and more to find out that they don’t have cancer. Some of those people are my friends.

And to be clear, my risk of getting breast cancer at some point during my lifetime remains high—up to five times that of other women. (Note: According to my genetics counselor, my family history combined with my test results pushes my risk of breast cancer over a 20% threshold into “higher risk” territory. I still do not understand what that 20% threshold represents or where it came from.)

I also know that I am lucky to have healthcare insurance. Not everyone in the U.S. does. Not everyone lives in the U.S., for that matter.

However, as a professional communicator, I am left with the question: How could the communications I received from the medical community have better helped me?

The most straightforward answer is that they should have used plain or plainer language in their communications. However, that goal can only be reached if the environment itself, including the user experience (UX), is less obscure. 

My UX: The App, the Waffle, and the Government

One of the benefits and drawbacks of the corporatization of healthcare in the U.S. is the proliferation of apps. These apps allow patients to make appointments, message their healthcare provider, and access test results—very convenient. I have two of them on my phone. The two doctors I interact with the most—my primary care physician and my OB/Gyn—use one app, and the local hospital, where my tests are done, uses another.

Each healthcare provider is owned by a different corporate entity—a total of three corporate entities. Plus, the doctor’s office app is managed by a fourth corporate entity, Athena Health. Because I set up that app originally to interact with my primary care provider, I cannot figure out how to use it with my OB/Gyn’s office. So, I’m stuck using a website interface for his office (as I do for my dermatologist, dentist, and optometrist).

The App UI Nightmare

To add to the confusion, the user interface (UI) for each of the two phone apps is slightly different. The main menu for the doctor’s office app is a vertical list. It clearly lists “Appointments” and “Messages,” but it also lists “MyHealth” and “Profile.” Huh? What are those for —and how are they different from each other?

The main landing page for the hospital’s app is a smorgasbord of images and options. At the top, below a pretty photo, is a set of four boxes, one of which invites me to “Meditate with Livi”—Livi is the chatbot. Um, not my highest priority, thank you.

At the bottom, below an additional set of boxes (each with a pretty photo), is a horizontal menu: “Home, My health, Schedule, Wellness, Menu.” OK, well, that’s a crapshoot. It took me a while to learn that if I click “My health,” I can access 21 additional menu items (icons), including “Messages” and “Appointments.”

It took me longer to realize that from this hidden menu, I could also access “Test results” and “Letters,” both of which were different from “Messages.” The “Test results” icon led me to the reports from the radiologists and pathologists. The “Letters” icon led me to the official file letters about my most recent test—usually written by the same radiologist or pathologist who had written the report.

But I could only respond to either if I backtracked to the 21-icon screen and chose “Messages.” Worse yet, if I want to send a message to my doctor about a test result, I have to leave the hospital app to sign in to the Athena Health app. This is madness!

The Waffle Letter

Then there were the letters. While the file letters were written in plainer language, they were clearly boilerplate.

The format was as follows:

• Four conditionalized sentences with blanks appropriately filled in
• A pre-written paragraph about dense breast tissue
• A pre-written paragraph about the inclusion of the test result/images in my medical record
• A pre-written thank you sentence.

The first four sentences were obviously fill-in-the-blank:

1. “Your recent [test] on [date] showed a finding that requires further evaluation.”
2. “A report of your results was sent to [doctor’s name].”
3. “Your recommended follow-up listed below is: [bulleted list of further actions]”
4. “You may already be scheduled for this exam. If not, please contact the scheduling department at [phone number].”

The wording “a finding that requires further evaluation” got me every time I saw it. Obviously, this waffle language fits well with a mail-merge mentality. It contains multitudes. But it does not help the patient understand.

Nothing in the wording suggests that my health might be in danger. In fact, the sentence contains no references to people at all. It refers, instead, to the test and the findings – depersonalized actions and things. How clinical.

Additionally, the letter did not communicate a sense of urgency or provide any specifics about my condition. My question, “What exactly is wrong with me?” went unanswered.

I get that the generic language—as well as the double set of communications—is likely a form of professional liability protection (or, if you prefer, CYA protection).  However, the bottom line is that I was directed to a set of actions—an endless loop of actions, it turned out—without knowing why I should complete them.

How on earth did healthcare communication get to this point in the U.S.?

The Government Mandate – or Lack Thereof

Poor communication in healthcare can, of course, have more devastating consequences than I experienced. In a recent article, the HIPAA Journal quotes a study by the Joint Commission International (JCI) that found that 80% of serious medical errors resulted from miscommunication between caregivers working with the same patient.

The journal notes that several models for caregiver-to-patient communication exist. The JCI recommends a couple of additional approaches. Here is the complete list of what I uncovered:

• RELATE: Reassure, Listen, Answer questions, Take action, Express appreciation
• STICC Protocol: Situation, Task, Intent, Concern, Calibrate
• BATHE Protocol: Background, Affect, Troubles, Handling, Empathy
• I PASS the BATON: Introduction, Patient, Assessment, Situation, Safety concerns, Background, Actions, Timing, Ownership, Next
• SABAR: Situation, Background, Assessment, Recommendation

The HIPAA Journal further notes that poor communication can impact compliance with the 1996 U.S. Healthcare Insurance Portability and Accountability Act (HIPAA). However, HIPAA itself doesn’t necessarily mandate good communication. (Instead, it mandates that health communications and records have privacy safeguards and be portable, digital, and non-discriminatory.)

The U.S. government mandate for clear communication came later, with an additional act and resources. In 2010, President Obama signed the Plain Writing Act, which required federal agencies to use clear communication that the public can understand and use. The Act led to the establishment of the Plain Language Action and Information Network (PLAIN), an interagency group that provides resources, training, and guidance on plain language to federal employees.

Additionally, PlainLanguage.gov serves as a comprehensive online resource maintained by the government. The website provides tips, examples, and tools for implementing plain language principles across various types of documents and communications. Many federal agencies have also created their own plain language programs and guidelines.

Sooooo, the feds must be clear with us. But our doctors don’t?

My Request: Plain Language in All Communication

The Federal Plain Language Guidelines (a downloadable PDF from planlanguage.gov) read like a style guide. The document’s major sections should look familiar to anyone who has written or read a manual of style:

• Think about your audience
• Organize
• Write your document
• Write for the web
• Test

Federal Plain Language Guidelines for Documents

In the “Write your document” section, the Federal PL Guidelines get very specific – 72 pages worth. Each section, dedicated to a single rule, contains:

• An explanation of the rule
• A description of how to change text to comply with the rule
• Before and After examples
• Additional discussion as needed
• A list of sources

As an example, here is the section for the rule “Don’t turn verbs into nouns” (p. 29):

I highly recommend this guideline document as a useful, readable resource. Here are some of its rules that I wish that my radiologists and pathologists had followed in their reports and file letters:

• Use active voice
• Use “must” to indicate requirements
• Avoid legal, foreign, and technical jargon
• If possible, define a word where you use it
• Design your document for easy reading

One thing of note here – As my local hospital updated its app, the text in the written reports became sort of searchable. That is, if you highlight a term in a report, links to at least three online articles pop up. It’s progress, maybe. Based on my experience, it seems more like an ironic nod to avoiding the fourth rule I listed above and, even more ironically, a nod to their patients’ reliance on Dr. Google for answers. But I digress….

Other Plain Language Resources

After the 2011 publication of the Federal PL Guidelines, the market for advice and training on plain language grew.  I suspect that the need is still great across U.S. federal agencies. However, I think the healthcare system also needs to get on board.

Attention should be paid to basic principles available from private and public entities. Two of my favorite websites are Plain Writing at the National Archives and the Center for Plain Language. The National Archives lists 10 basic principles of plain language, and the CPL lists 5 steps to plain language, with some subpoints. The use of active voice and everyday words is central in both.

Calls for the standard use of recognizable terms in medical reports have been around since the 20^th century (and probably even earlier). I understand that the task might not be so easy. In his 1990 paper “A Plain English Movement in Medicine” (which is itself a response to an earlier paper), attorney George Hathaway, points out that “What is needed is agreement on what a thing should be called and consistent use of the term agreed upon….[However,] In the area of disease naming, there is no authority.”

Seventeen years after that article was published, many in the international community came together under the International Health Terminology Standards Development Organization (IHTSDO), also known as SNOMED International, to attempt to standardize medical terminology. In March 2024, the U.S. National Institutes of Health (NIH) released a new U.S. edition of SNOMED’s clinical terminology (CT) list.

The NIH’s combined, mapped list (CMT), released at the same time, “is a set of clinician- and patient-friendly terminology.” As far as I know, both lists are available to licensees only, not the public.

None of this progress was reflected in my experience.

In my view, every medical report should explain the terms used and the implications of those terms. If your organization has an internal glossary, share it or share a link to the single, publicly available glossary you use. If your organization doesn’t have or use a glossary, then include the definition of a term in line where you use it. And for heaven’s sake, don’t use all caps! That doesn’t help me understand anything!

[rant somewhat over]

To the point, medical conversations are crucial conversations. They deserve time and attention. As Laura Jane Sahm points out in her article “Why doctors and nurses should use more plain language and less jargon,” patients and medical professionals alike must ask better questions—of each other and of themselves.

Your Business Content Here

The absence of plain language in any business communication can have serious repercussions. It can obscure important information, leading to misinterpretations and errors. Additionally, it can alienate your audience, diminishing their engagement and trust. Over time, these inefficiencies can damage your organization’s public reputation and its effectiveness. Insert your organization’s name here, if applicable.

Extreme examples abound. A BC Campus article provides six case studies of costly communication errors. In one example, a software company had to rewrite a technical manual to the tune of $350,000 U.S. More memorable (for most of us) was the explosion at the Deepwater Horizon oil rig that killed 11 people in 2011. Investigators found that a test of the cement seal, which identified problems, was “incorrectly judged a success” because of poor communication.

To end on a positive note, embracing plain language can transform not only how your organization communicates but also how well it advances its goals. As the University of Texas’s Technical Communication department explains, the benefits of plain language are many. It can strengthen relationships with your audience and improve efficiency. By making plain language a cornerstone of your content strategy and communications, you not only mitigate risks but also pave the way for more effective and impactful interactions. Plain language makes good business sense—let it be the foundation of your success.

I can help! Contact me at debra@dkconsultingcolorado.com.

Epilogue to My Story

My story continues. My recent diagnostic mammogram, scheduled on the heels of an MRI, showed no problems found. The radiologist, to her credit, drew me into a private room to tell me that personally. She didn’t overrule a recommendation from her MRI colleague for another biopsy of a mildly “suspicious area,” but my doctor and I have agreed to postpone that for a few months. I needed a mental health break.

This blog post represents my attempts, through research and documentation, to understand the merry-go-round I found myself on. I am not a medical professional, nor am I offering medical advice.

For other women over 40 who might find themselves in similar circumstances—or anyone struggling similarly—I urge you to ask questions until you have a complete understanding of your medical situation. The three questions from the Ask Me 3 tool from the Institute for Healthcare Improvement are a place to start.

For medical professionals and paraprofessionals, I urge you to be clearer in your communications with patients. I also urge you to carefully consider whether a patient really needs to be on the cancer-screening-to-medical-procedure hamster wheel. Recent articles in Fortune and the New York Times suggest that over-testing U.S. seniors yields questionable benefits.

For those of you in the plain language community, I would urge you to continue your work and broaden its scope to include medical communications to patients. Let’s make some version of that SNOMED CT list public!

(Photo by Ben Hershey for Unsplash.)