Patients Matter, Words Matter: The Power of Language in Clinical Research

Nov 07, 2024

Guest blog by Almenia Garvey, M.Sc. Sr Director, Global Feasibility/Site Engagement, Allucent and Joyce Moore, PhD, MBA, Global Head Patient Engagement, Allucent

A male doctor with glasses and a beard and dressed in a white lab coat, navy blue scrubs, and a stethoscope around his neck speaks with an old woman with short, gray hair.

Have you ever stopped to think about the words we use every day in our work? It might seem like a small thing, but in the world of clinical research, every word we choose can carry a lot of weight. The terminology we employ and how we frame our discussions can shape perceptions and influence actions. Choosing our words carefully matters, especially when it comes to referring to the wonderful individuals who volunteer for clinical research. Our language choices can have a significant impact on patient engagement and participation.

Patients or Participants, Not Subjects

Think about the last time you referred to someone participating in a clinical trial. Did you call them a “subject”? Traditionally, that’s been the term used which can create a sense of detachment, making participants seem like mere objects of study rather than acknowledging their active role and humanity. The terminology “subject” also continues to be prevalent in software systems, in protocols, and other documentation thus continues to be a drip-fed into our language.

At Allucent, we believe it’s time for a change. How about we ensure we call these “Medical Heroes” “patients”? This simple shift in language can make a world of difference. It emphasizes that they are active participants in their healthcare journey, deserving of respect, empathy, and personalized care. By recognizing them as patients or participants, we honor their dignity and highlight the collaborative nature of clinical research.

Screen Failures: A Harmful Label

Another term that could use some rethinking: “screen failures.” This label is often used to describe patients who don’t qualify for clinical trials after screening. But think about it – how would you feel if someone told you that you “failed” a screening process? It could sound rather harsh.

Imagine being in their shoes. Such language can evoke feelings of inadequacy, disappointment, and even shame. It suggests that the individual did something wrong or is somehow deficient, which couldn’t be further from the truth. The screening process is there to ensure patient safety and study integrity by selecting participants who meet specific criteria.

Instead, why not refer to these individuals as “screening non-qualifiers” or simply “screening participants”? This subtle shift in language acknowledges their participation without attaching any judgment or stigma. It helps preserve their dignity and self-esteem, making the whole experience more positive for everyone involved.

The Ripple Effect of Positive Language

The importance of using inclusive and empowering language extends beyond individual interactions to the broader landscape of clinical research. The way we communicate with patients, colleagues, and the public can shape perceptions of the industry as a whole.

When patients feel respected, valued, and supported throughout their participation in clinical trials, they are more likely to have positive experiences and consider future participation. Conversely, negative language and attitudes can deter individuals from engaging in research, perpetuating disparities and hindering scientific progress.

As clinical research professionals, we have a responsibility to be mindful of the words we use and the impact they can have. By choosing our language thoughtfully and intentionally, we can create a more welcoming and inclusive environment that fosters trust, collaboration, and ultimately, better outcomes for patients.

Join the Conversation

Authors Almenia Garvey, M.Sc. (left) and Joyce Moore, PhD, MBA.

What are your thoughts on these changes in terminology? Have you noticed the impact of language in your own experiences with clinical research? Your insights and experiences are valuable, and I encourage you to share them.

In conclusion, words matter. Let us strive to use language that uplifts and empowers patients, recognizing their invaluable contributions to advancing medical knowledge and improving healthcare for all. Together, we can make a meaningful difference – one word at a time.

This post also appears on the Allucent blog.

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