The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project
Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can also confuse, mislead, and even hurt us. The intent of a spoken word can be misinterpreted leading to an unintended consequence. The majority of our words are a result of habit and convenience. If we follow the ripple effect of our words to understand the emotions and/or behaviors they may potentially trigger, would it force us to pause, think and perhaps communicate differently? There are terms and phrases that those of us who work in healthcare use regularly. Some of these words have been around since the turn of the century, while others are trendier terms that we've adopted in healthcare. In my work with patients and their families, I have begun to capture the terms that can cause confusion. I’ve captured thousands of terms in my research, and I’ve been working with members of the community to identify new terms to consider, which can allow us to reimagine the language we use with patients and their families in healthcare. There are words that we might continue to use in exchanges with one another as healthcare professionals, academics, researchers, advocates, etc, but this project was focused on simplifying the language we use with patients and their families.
Why? Connection is a conversation between the patient story and the language of medicine. Words have the power to transform healthcare and if you don’t speak their language, they won’t hear you. How? >4,000 words/phrases have been crowd-sourced where we asked, “What word(s) should we stop using or limit use of with patients and/or their families? Why?” The submissions were analyzed and the Top 10 most common words are listed below. There are plenty of other words that don’t make sense to patients and their families, but we’ll start with the Top 10 with the intent of building upon these over time.
Top 10 Words (and the most interesting and sometimes humorous explanations as to why!)
#1 Patient Engagement The use of this trendy term skyrocketed several years ago and has led to start-ups, tools, apps, workgroups, behavior change strategies, research studies and even mission statements (among other things). Unfortunately, there's a lack of consistency in how we're defining this term.
Here’s what a patient had to say, which is indicative of how easy it is for words to get lost in translation. “Last I checked, engagement was a formal agreement to get married. How does that apply to healthcare??”
Another patient explained, “ It’s a paternalistic term. If I don’t want to track my symptoms using your app and don’t want a weekly call, does it make me non-engaged? I don’t always want to be reminded that I am sick but I’m managing my health to the best of my ability, while managing life. Why does it have to be one size fits all?”
#2 Patient Journey With the prevalence of journey mapping, this term has become widely used in our circles.
As one patient put it, “ A 6 day trip to an exotic place that I’ve happily planned with an origin and destination is a journey. The multiple sclerosis I have or the cancer my husband got a few years ago—that’s not a journey!”
#3 Patient-Centric Although the Institute of Medicine defines patient-centered care as “Providing care that is respectful of, and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”, many in healthcare have deviated slightly and use this term in different capacities to define strategies focused on the patient.
“This seems fairly new and I hear it all the time now. What were you focused on before you became patient-centric? It makes me wonder if this is just marketing buzz. Also, if the goal is partnership, and maybe on even terms, shouldn’t I be part of the circle instead of in the middle?”
#4 Co-Create This term has risen in popularity given the focus on design thinking principles and partnership in healthcare, yet it has left several baffled (and not just patients)!
In a meeting of the minds, a patient advocate said, (and I paraphrase here but this led to a roar of laughter and hopefully won’t offend anyone) “We would never use the word co-create with our patients. Let’s co-create! What does that even mean? It almost sounds like procreate.”
#5 Compliance & Adherence These two words aren’t new to the “no-no” list, yet many of us continue to use them.
One of the most direct responses as to why we should stop: ”Pick up a dictionary or a thesaurus to see how insulting these terms are! These words are synonymous with OBEDIENT, SUBSERVIENT, SUBMISSIVE, and PASSIVE. Non-adherence is equivalent with delinquency? Aren’t we in the 21st century?!”
#6 Survivor This word isn’t new to controversy either with questions around whether it’s cross-culturally acceptable.
“It’s a pessimistic label that forever ties me to a traumatic event in life, “ a patient eloquently explained.
#7 Fight This word has been the subject of research projects with reference of war metaphors connected to a feeling of guilt and/or failure.
“I may come out swinging, but if I don’t win the fight, did I not fight hard enough?” asked one patient.
#8 Caregiver This has different meanings in other countries, such as a nanny or au pair.
As one caregiver articulated, “I don’t see myself as a GIVER of care. I’m a wife that’s confused and just trying figure out how to help my husband manage his mental health and my family cope.”
#9 Shared Decision Making This is a topic that’s been around for decades with various models, guidance documents and decision aids introduced over the years.
“I understand that patients and families are playing a greater role in their healthcare, and ideally there is more exchange and sharing of bi-directional information, but isn’t the final decision made by my wife after we’ve also gotten a second, and maybe even a third opinion, done our research, figured out what insurance is paying, and then figured out what’s best for us right now? It’s ultimately my wife’s decision—not a shared one,” described a caregiver.
#10 Negative This term has been the source of confusion for quite some time, yet continues to pervade our healthcare conversations. Healthcare professionals often use this term to describe a “normal” value or result, but it has lead to an initial wave of panic for patients who misinterpreted its meaning.
“ When the doctor told me that I had a negative chest x-ray, I was devastated. How would I know that it means normal??” Next Steps: The next steps are to involve the community (YOU) in the “Words Do Matter” Project through your feedback and suggested alternative terms. We will continue our current participatory co-design work with the community, patients and their families. We will also conduct “Man on the Street” interviews to supplement this work. Ultimately, the goal is to develop a patient-friendly lexicon in collaboration with patients, caregivers and the broader community.
How to Get Involved:
Co-Design the future and get involved. We're working with members of the community across all sectors to co-design a new patient-friendly lexicon. Tell us what words you would suggest in lieu of the Top 10 terms that cause confusion?