This cross-sectional study assesses patient understanding of common medical jargon terms using results of a survey conducted by the University of Minnesota at the 2021 Minnesota State Fair near St. Paul, Minnesota, USA. 215 volunteers completed the survey (116 written, 99 verbal). Respondents had a mean (SD) age of 42 (17) years, 140 (65%) had a bachelor’s degree or higher, and 135 (63%) were female. All respondents completed the entire survey. The demographics were statistically similar across the survey type. Because there was no significant difference in correct understanding between those who were given the written and verbal surveys for all but 2 questions, the responses are grouped together regardless of the method of survey administration for the remainder of the analysis.
There was mixed understanding of which phrases were meant to convey good news vs bad news. 207 respondents (96%) knew that negative cancer screening results meant they did not have cancer. However, 170 respondents (79%) knew that “your tumour is progressing” was bad news, and 143 knew that positive nodes meant their cancer had spread (67%). Only 89 (41%) correctly interpreted “neuro exam is grossly intact” as good news. While 127 respondents (80%) recognised that an unremarkable chest radiography was good news, only 44 (21%) correctly understood that a clinician saying their radiography was impressive was generally bad news. Few respondents accurately understood the prompts that required a free-text response. Sixty-two respondents (29%) correctly interpreted “bugs in the urine” as intending to convey a urinary tract infection, 20 (9%) knew what febrile meant, and 4 (2%) understood the phrase occult infection.
Significantly more respondents correctly interpreted the phrase nothing by mouth compared with the use of the acronym NPO (162 [75%] vs 24 [11%]). When comparing the understanding of blood infection through non jargon (“blood test shows no infection”) vs jargon (“your blood culture was negative”), significantly more respondents correctly interpreted the non jargon phrase than the jargon phrase (208 [98%] vs 186[87%]).
In multivariable logistic regression models, there were a few statistically significant associations between demographics and understanding. Notably, increasing age was associated with increased understanding of nothing by mouth and negative blood cultures but decreased understanding of the term impressive in the context of radiography findings. Two questions showed an association with increased understanding if the respondent had a graduate degree: the phrases nothing by mouth and unremarkable, and the acronym NPO and the term febrile were better understood by women.
Our testing of several phrases that had been studied previously yielded several notable differences, in most cases, with a higher proportion of our study sample demonstrating understanding. In 2001, Chapman et al found that among a sample of 105 adults in the UK, only 52% understood that the phrase “the tumour was progressing” signified bad news. They noted that progress is interpreted as a good thing in most settings. In our study, 79% of respondents correctly understood this phrase as bad news. 43% of the respondents in the Chapman et al study correctly understood that having positive nodes meant their cancer had spread vs 67% correct among our sample.
Some of these differences may be accounted to cultural differences between the UK-based sample in the Chapman study and our sample in the US. The high number of college graduates in our sample (65% with a bachelor’s degrees or higher) compared with the general population of the United States (35%) may also be a factor, although Chapman et al also reported that “a large proportion of the sample was well educated.” It should be noted that we found no statistically significant association with the level of education in the accuracy of interpreting the jargon in our study sample for all but 2 survey questions, so this is unlikely to account for the differences fully.
Some changes in understanding may be the result of the COVID-19 pandemic. We hypothesise that the widely used designations of negative and positive in the context of viral testing during the pandemic have increased the public’s understanding of these terms in the medical context, accounting for the near-universal understanding of negative cancer screening being considered good news in our study. However, it is worth noting that when comparing the understanding of the phrase “your blood test shows no infection” and “your blood culture was negative,” significantly more respondents correctly interpreted the phrase that avoided the word negative altogether.
The use of terms that mean something different in common usage than in a medical context was a frequent cause of confusion in our study. More people believed that the phrase “an occult infection” had something to do with a curse rather than a hidden infection. Fewer than half knew that their neuro examination being “grossly intact” was a good thing, possibly because the word “gross” more often means “unpleasant” in common usage. Clinicians may not recognise these terms as jargon because they are not categorised as technical, medical terminology, but they have been shown to be used frequently in clinical settings.
Given that increasing age comes with more opportunities to have heard these terms used in a medical context, it is somewhat surprising that older age was only associated with better understanding of 2 of the 13 phrases. The lack of consistent predictors of understanding by the demographics we studied (ie, age, gender, and education) highlights the importance of using clear communication with all patients. It is also worth noting that while nothing by mouth was better understood than NPO by nearly 7-fold, 1 in 4 respondents also did not understand the phrase nothing by mouth. Given that in everyday language we do not talk about the act of eating or drinking as taking something by mouth, perhaps the clearest way to indicate that a patient should abstain from oral intake is to simply say, “You should not have anything to eat or drink.”
Clinical trials depend on patient participation, but trial jargon builds walls instead of trust. Terms like “randomisation,” “placebo-controlled,” and “protocol deviation” confuse participants, making them feel excluded from their own healthcare decisions. Patients who don’t understand the language feel lost, uncertain, and disengaged.
This confusion isn’t harmless. It damages recruitment, increases dropout rates, and reduces adherence. A patient unsure about what’s being asked of them is less likely to consent. If they do join, misunderstandings about the trial process can lead to early withdrawal. Patient trust is fragile, and unnecessary complexity only makes it weaker.
Bridging the gap starts with language. Plain, accessible explanations give patients confidence. They should know exactly what’s happening at every stage. By removing jargon, research teams foster partnerships instead of creating barriers. This shift doesn’t just improve retention—it strengthens public perception of clinical trials, making future recruitment easier.
Trust is hard to build and easy to lose. A lack of clarity fuels suspicion, particularly among communities with historical reasons to distrust medical research. If patients feel like they’re being misled—or simply don’t understand what they’re signing up for—they’ll disengage.
This loss of trust doesn’t just affect one trial. Negative experiences spread quickly through word of mouth, deterring others from participating. A single instance of unclear communication can ripple through a community, making recruitment for future studies even harder.
Patients who do stay enrolled may not fully grasp key elements of their care. Confusion around dosages, procedures, or potential side effects can lead to errors, putting participants at risk and compromising data integrity. When the research team assumes patients understand but never actually checks, mistakes become inevitable.
Addressing this issue requires more than simplified consent forms. Real engagement happens through ongoing conversations, where patients feel comfortable asking questions. If a term isn’t commonly used outside the industry, it shouldn’t be used without explanation. Research teams must remember that technical accuracy doesn’t matter if patients don’t understand what’s being said.
Transparency is the foundation of trust. When patients feel informed and respected, they’re more likely to commit to a trial and follow through with the required steps. But trust isn’t built through words alone—it’s about how information is delivered.
Patients need information that is plain and direct, with no unnecessary technical terms. It must be relevant, focused on what participants need to know, and presented in a conversational way that feels natural rather than scripted.
The issue extends beyond consent forms. Patient education materials, pre-screening conversations, and investigator meetings all play a role in shaping patient perceptions. If patients hear a jumble of technical terms at every touchpoint, they’re more likely to disengage. But if communication is clear and tailored to their needs, they’ll feel empowered rather than overwhelmed.
This approach is especially important in diverse communities where language barriers add another layer of complexity. Providing clear, translated materials in addition to verbal explanations helps bridge the gap. Making an effort to listen and adapt to different patient needs shows respect and reinforces trust.
Communities with historically low participation rates in clinical trials often cite poor communication as a key reason for hesitation. Many have experienced a lack of transparency in healthcare settings before, making them cautious about new medical interventions. By prioritising clarity, researchers can show that trials are not something done to patients but something done with them.
Trial jargon doesn’t just confuse patients—it creates a power imbalance. When one side of a conversation understands the terms and the other doesn’t, it reinforces the idea that researchers hold all the authority. Patients may feel pressured to agree to things they don’t fully understand, leading to ethical concerns about informed consent.
Informed consent should be exactly that—informed. This means ensuring that patients grasp what’s being communicated, not just signing a document because they feel they have to. The language used in trials should empower participants, giving them confidence in their choices.
There’s also a practical impact. Patients who don’t understand instructions may struggle to follow treatment protocols correctly. Miscommunication increases the risk of errors, affecting trial results and patient safety. Research teams must take responsibility for clarity. If a patient doesn’t understand something, it’s the trial team’s fault—not the patient’s.
The problem isn’t limited to patients. Family members and caregivers who support trial participants often need to understand key trial details, too. If communication is overly technical, these support networks may struggle to provide the help that patients need. That can lead to missed appointments, incorrect medication adherence, and unnecessary stress for participants.
Making information accessible isn’t a legal box to tick—it’s a commitment to ethical research. Patients deserve clear, honest communication. They’re not test subjects; they’re partners in the advancement of medicine.
Shifting from jargon-heavy communication to patient-friendly language doesn’t require a complete overhaul. Small, practical changes make a big difference.
Testing readability ensures that information makes sense to non-experts. If something wouldn’t be easily understood by someone outside the field, it should be rewritten. Using analogies helps connect medical concepts to familiar experiences, making them easier to grasp. Checking for understanding instead of assuming clarity ensures that patients are truly informed. Encouraging questions reassures patients that no query is too basic and that their concerns are valued.
It’s also important to involve patients in shaping communication strategies. Engaging patient advocacy groups, community leaders, and previous trial participants can help research teams understand what works and what doesn’t. Patients who have been through the process before can offer valuable insights into where language fails and what changes would make the experience more accessible.
Another useful approach is the teach-back method. This involves asking patients to explain key trial details in their own words. If they struggle, it’s a sign that the explanation needs to be simplified. This isn’t about testing patients—it’s about making sure communication is effective.
Building patient trust isn’t about dumbing things down—it’s about making sure people have the information they need to make informed decisions. Patients want to be involved in their care, but they need the right tools to do so.
Keith Berelowitz is the Founder of trialport, a company redefining patient engagement and retention in clinical trials using living experience, proven methods, and AI.