Clinical Trial Participants Matter

Recognizing The Invaluable Contribution Of Clinical Trial Participants

Some people call them heroes. Others call them guinea pigs.

Regardless of what the public calls clinical trial participants, it’s what they do and have done for those in private that matters. Clinical trial participants are far more than just participants. They aren’t complacent by any means, and their opting-in to be a part of a study is not something to be taken lightly. Clinical trial participants might seem invisible at times, but they are active members of future patients’ care teams. They make it possible for treatments to come to market because they take risks. They invest in themselves, in science, and in future patients when they decide to participate in clinical trials. Their reason for enrolling in the first place may vary, but their impact spreads far and wide.

It is fairly common for most patients to have met with their doctors and nurses in-person at least once. This means that patients know what these care team members look like and can ask them why they decided to work in health care. While patients can’t always ask those who participated in the clinical trial for their current treatment why they decided to enroll, they can take a guess at why those participants did. Maybe a participant’s other treatments had failed, maybe they wanted to give a cutting-edge drug a chance, or maybe managing a cancer wasn’t enough and a participant wanted to invest in forward-looking science in an attempt to cure their disease. Given the new focus on biomarkers, in certain circumstances, clinical trials might even be safer and more effective than conventional chemotherapy. Regardless, reasons for participating in a clinical trial, while the cancer might be the exact same, can be completely different.

Clinical Trials Mean Different Things To Different People

Groups like Eli Lilly and Company have crowd-sourced patient interpretations of clinical trial participants in their art project, The Hero’s Journey. This project gives patients a chance to thank those who have come before them, those who are working on their behalf, and those who have yet to come. It’s also an opportunity to define what a clinical trial means, something that can be so subjective from a patient’s point of view. Objectively, a clinical trial focuses on the effectiveness of a drug in treating or curing a disease. To patients, clinical trials are also tied in with experiences, memories, people, and emotions. The decision-making process that precedes enrolling in a clinical trial has to be considered when defining the process. This means including friends and family members who are a part of the care team.

Caregivers And Clinical Trials: Unsung Support Systems

Caregivers play many different roles, depending on the varying needs of their loved ones. Each patient has their own unique needs, ultimately meaning that their caregiver will have particular roles in their own care as well. One patient might need their caregiver to monitor medication and appointments, while another might need help grocery shopping or taking their children to school. The physical and emotional support that caregivers provide is what allows clinical trial participants to move science forward. This ever-changing role doesn’t even need to be defined, but it does need to be valued.

Clinical trial participants are the reason that current cancer patients have access to so many of the treatments available today, and caregivers are their unsung support systems.

What do clinical trial participants mean to you? Do you consider participants to be regular patients, or a group of people working to advance the future of medicine? Are they just doing what they have to do, or helping to give future patients access? Maybe they’re all of those things. Or, maybe you don’t even have the words to describe just how important clinical trial participants are, because without them, you wouldn’t be here.

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Charlie Blotner Precision Medicine Advocate

Charlie Blotner Precision Medicine Advocate

Charlie Blotner is a senior undergraduate student in Family & Human Development at Arizona State University. Charlie has a passion for increasing clinical trial participation, and wants to empower patients to make the most informed medical decisions for themselves possible with the most research information possible. Charlie has spoken at Stanford Medicine X and believes in the power of patient storytelling. As a brain tumor survivor and patient advocate, Charlie co-moderates Brain Tumor Social Media (#BTSM) Chats on Twitter. More than anything, Charlie wants to be able to contribute to the work that helps patients to be able to breathe easier.
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