Watch Your Language: Words Matter in Scientific and Health Communications
August 31, 2023
I have always loved words. As a child I eagerly anticipated our weekly visits to the local library, playing anagrams with my mother while waiting for the bus to summer day camp, and Saturday afternoon Scrabble games with my sisters. In my current life, I can’t get to sleep until I’ve completed the day’s Wordle and the crosswords in the New York Times and Seattle Times. Friends and family lovingly (I think) tease me about my use of complete sentences and formal grammar when texting. I am preoccupied with the correct usage of “which” vs. “that” and will die on the hill that “data” are always plural. In an age when so much communication is reduced to memes, abbreviations, or acronyms and public figures find new ways to use language to distort the truth, I often feel like we are coming to the end of an era that began with the printing of the Guttenberg Bible in the 1450s. However, several recent articles and studies suggest that there is a renewed appreciation for the power and importance of language within the medical and health communities.
An article in The Lancet announced the formation of the Lancet Diabetes & Endocrinology Commission on clinical obesity, which was established to identify and define its clinical and biological criteria. A key driver for the formation of this Commission is the ongoing confusion about whether the current definition of obesity (typically a body mass index [BMI] ≥27.5 kg/m2 for people of Asian origin or >30.0 kg/m2 for everyone else) describes an actual disease or a risk factor for other diseases. As noted in the article, obesity-related diseases can occur in people who don’t meet the BMI definition of obesity, and many people who meet that definition now show evidence of disease. In many countries, 30-40% of the population meet the BMI criteria for obesity, so the definition—risk factor or disease—has significant ramifications for access to weight-loss therapy, people’s self-perceptions, societal stigma, clinical practice, and many other aspects of physical, emotional, and financial health. This underscores the power of a single word to shape the lives of millions of people.
In her article in Newsweek, Dr. Shoshana Ungerleider described how surprised she was to discover that she has a mutation in the BRCA2 gene that is associated with an increased risk of breast and ovarian cancer. With no history of these cancers in her family (although a history of other types of cancer did exist), she didn’t think she was at risk for carrying this mutation. However, it was identified in her father’s pancreatic tumor, after which she underwent genetic screening and counseling and found that she carried it as well. She emphasizes that BRCA mutations are found in families without breast and ovarian cancer and notes that many physicians are unaware that pancreatic, prostate, melanoma, and other types of cancer are also associated with these mutations. This, in itself, is an example of the importance of language. The BRCA genes were first identified in families that had a history of breast cancer (and the name of the gene itself is derived from the cancer with which it was first associated, BReast CAncer). While our understanding of the role these genes play in the development of cancer has evolved, the name remains unchanged—perhaps to the detriment of many people with BRCA-related cancers that occur in tissues other than the breast or the ovary.
While some language conventions have stagnated, others have started to move in more positive directions. For example, terms such as “diabetic” or “smoker” are being replaced with “a person living with diabetes” and “a person who uses cigarettes.” While the former terms were always clearly understood, they had the effect of defining the individuals as their disease or risk factor. The latter terms acknowledge the person first.
Through this lens, it becomes clear that science communicators like us need to reconsider and be more deliberate in our use of language in a variety of settings. Should diseases that are associated with sex-specific anatomy still be discussed in the context of gender? Is it appropriate to refer to “women who are pregnant” or “men with testicular cancer” when we know that there are people who experience these conditions but don’t identify with the genders that have been used historically to describe them? Do we speak of “subjects” in a clinical study—when a subject is defined as something that is discussed, described, or dealt with—or “participants”, who are actively taking part in their own health care? Even the word “patient” comes with implications to which we probably don’t give sufficient thought. Most dictionaries define the word as someone receiving or registered to receive medical care or treatment. Does this imply that individuals who don’t seek or have access to care or who don’t require any type of medical intervention aren’t patients?
Does all of this argue for dropping as many labels as possible and simply referring to “people”? And would recognizing every person’s inherent humanity do anything to improve the many failures of communication that exist within our health system?
A study comparing responses to patients’ questions provided by physicians and ChatGPT found that the ChatGPT responses were considered significantly more empathetic than those provided by physicians. Are machines really better than humans at acknowledging our shared human condition and helping those with medical questions feel seen and heard? A recent article in the Journal of the American Medical Association discusses how upcoming mandates to screen hospitalized people (and yes, I’m deliberately choosing this over “patients”) for health-related social needs have the potential to increase the racial and socioeconomic inequities they are intended to reduce. The authors emphasize the importance of differentiating between social risk (individual-level social factor, which is the actual focus of the mandates) and social need (the individual’s perception of needs). The former can cause people to feel shamed, judged, and discriminated against while the latter respects the individual’s autonomy while also providing actionable solutions to needs the individual identifies. Much of this comes down to the form of communication used in each approach—are we using questions that probe how a person lives or are we offering a menu of solutions for achieving health goals from which the person has the option of choosing? Are we saying, “this is what is important to me” or “help me understand what is important to you and how can I help”?
Another article in JAMA discusses miscommunication in cancer care. While the authors cite fragmented care and time constraints as contributing factors to this detrimental situation, they also emphasize that words matter. Jargon, vague language, sociocultural language differences, and discomfort with communicating difficult news also play key roles in creating an environment in which patients’ expectations may not be aligned with their actual prognosis. This gap can lead to adverse health outcomes, increased anxiety, and further erosion of trust in the medical community.
Perhaps none of these recent findings and reports should come as a surprise. How we use and define language has been a point of discussion for centuries. Juliet famously asked Romeo, “What’s in a name?” while several centuries later President Clinton more infamously said, “It depends on what the meaning of the word ‘is’ is.” Today’s science communicators face equally thorny questions that touch as much on how we help people understand health and disease as they do on how we understand each other as human beings. Watching our language when answering them is essential for positive, effective, and equitable communication.