Why Would Anyone Want to Participate in Clinical Trials?

Medical advancements that shape our lives today exist because of years of research, innovation, and the willingness of individuals to participate in clinical trials. These studies, once as simple as James Lind’s 18th-century scurvy experiment, have evolved into highly structured processes designed to ensure both safety and efficacy in developing new treatments. Without them, we wouldn’t have life-saving drugs like penicillin, insulin, or COVID-19 vaccines.

Yet, despite their importance, many people hesitate to participate. The decision to join a clinical trial is personal, influenced by factors such as access to new treatments, the desire to contribute to science, and the potential to help future generations. However, concerns about safety, lack of awareness, and historical distrust in medical research create barriers to participation.

So, why would anyone participate in a clinical trial? Before we explore this, it is important to know the challenges that deter people from participating in clinical trials.

Challenges in Clinical Trial Participation

Safety Concerns: Fear of side effects or receiving an experimental treatment deters many individuals from enrolling. Some worry about unforeseen adverse reactions, while others are hesitant due to misconceptions about clinical trial safety. However, every trial follows strict ethical guidelines and regulatory oversight to minimize risks and protect participants.

Lack of Awareness: Many individuals, particularly those who might benefit the most from clinical trials, do not know they exist or how to find relevant ones. The information gap between researchers and potential participants limits the diversity and inclusivity of trials, ultimately slowing medical advancements.

Mistrust in Medical Research: Mistrust in medical research, particularly among minority communities, has deep historical roots, with one of the most well-known examples being the Tuskegee Syphilis Study. In this unethical study, Black men with syphilis were deliberately left untreated for decades without their consent, leading to widespread skepticism toward clinical trials and the healthcare system (CDC – Tuskegee Study). To address this mistrust and improve diversity in clinical research, organizations like the FDA and NIH have launched initiatives focused on transparency, ethical recruitment, and community engagement. The FDA’s Diversity in Clinical Trials program aims to increase representation by setting new guidelines for inclusive trial design and outreach efforts (FDA – Diversity in Clinical Trials). Similarly, the NIH’s Community Engagement Alliance (CEAL) works with local leaders to build trust and ensure that historically underrepresented populations have access to research opportunities. These efforts are essential for addressing past injustices and ensuring equitable healthcare advancements for all.

Logistical Barriers: Travel, time commitment, and financial costs often discourage participation. Many trials require frequent visits to research centers, which can be challenging for those with mobility issues, full-time jobs, or caregiving responsibilities. Additionally, long hours spent at trial sites for assessments, treatments, or monitoring can be burdensome. Travel expenses, accommodation costs, and the potential loss of income further complicate participation. Addressing these barriers through decentralized trials, travel reimbursements, and remote data collection can significantly improve accessibility.

Strict Eligibility Criteria: Clinical trials have specific inclusion and exclusion criteria based on age, medical history, and treatment status. While necessary for scientific rigor, these limitations often result in a narrow pool of eligible participants, leaving out many who are willing to participate.

Despite These Challenges, Why Would Anyone Participate In A Clinical Trial?

People choose to participate in clinical trials for various reasons, including personal health benefits, access to cutting-edge treatments, and the desire to contribute to scientific progress. Here are some of the main motivations:

1. Access to New Treatments Before They Are Widely Available

Many clinical trials test innovative treatments that are not yet accessible to the general public. Participants can benefit from receiving advanced therapies, especially if they have a condition with limited treatment options. For Mary Kay Dauria, a breast cancer survivor, clinical trials became a crucial part of her journey. Over 18 years, she participated in three studies at MD Anderson Cancer Center, each driven by a desire to explore promising treatments while helping advance medical research.

“As an 18-year cancer survivor who has been on three clinical trials, I am a big proponent of them – especially at MD Anderson,” she shared in an article for MD Anderson Cancer Center. “Are clinical trials going to work for everyone who participates in them? No. But I think there’s a misconception out there that joining one somehow makes you a guinea pig. And that’s not the case.”

Her first trial tested whether a cholesterol drug could help prevent breast cancer recurrence. The second study, which she actively sought out, investigated whether an IUD could prevent a precancerous condition from progressing to uterine cancer—an approach that ultimately helped her avoid major surgery. More recently, she joined a trial exploring whether blood sugar control might reduce the risk of cancer recurrence. Through these experiences, she witnessed firsthand how clinical trials not only provide potential personal benefits but also drive advancements in treatment for future patients.

2. Helping Others and Advancing Science

Some volunteers join trials not just for personal health reasons but to help advance medical knowledge. Their participation may lead to new treatments that benefit future generations, including their own families.

Brian Wallach’s journey exemplifies this. After being diagnosed with ALS in 2017, he co-founded I AM ALS to raise awareness and accelerate research. When asked what he would want researchers, clinicians, and others working on neurodegenerative diseases to understand from the patient perspective, Brian emphasized:

“We are here to work with you. We want to be a part of finding cures. We may not speak the same language, and we may not know every single term or every single chemical compound, but that doesn’t mean that we are not a part of solving this problem with you. We want to accelerate your discoveries because they will help save our lives. That means that we want to help in every way we can: raising more funds, raising more awareness, and being a part of your clinical trials. Help us help you, and we think together we can make amazing things happen.” (Source)

Through I AM ALS, Brian has not only transformed patient advocacy but has also helped mobilize funding, policy changes, and clinical trial participation, demonstrating the power of collective action in the fight against ALS and other rare diseases.

3. Receiving Expert Medical Care

Participants in clinical trials often receive close monitoring and care from top medical professionals. This can be especially beneficial for individuals with complex conditions requiring specialized attention.

Kim Marincik and her two sons have Danon disease, a rare genetic condition. Her oldest son participated in one of the first clinical trials for Danon, traveling to the University of California, San Diego, for treatment. Through her advocacy work with The Danon Foundation, she supports other families navigating clinical trials and educates them on available research opportunities. Her journey underscores the challenges and triumphs of participating in rare disease trials.

4. Financial Incentives

Some clinical trials offer compensation for participants’ time and travel expenses. While this shouldn’t be the primary motivation, it can be an added benefit for those who qualify.

How Is TrialX Making It Easier for Patients to Participate in Clinical Trials? 

At TrialX, we are dedicated to breaking down barriers to clinical trial participation by leveraging technology to simplify the process for both patients and researchers. Our innovative solutions ensure that more individuals can find and enroll in trials that could potentially change lives.

Increased clinical trial awareness via AI-powered clinical trial finders 

With our AI-powered clinical trial finders, we help organizations raise awareness about participation opportunities. Our platform uses intelligent algorithms to shortlist relevant trials based on their health conditions, location, and eligibility criteria. Our clinical trial finder is supporting leading advocacy groups, including  The Michael J. Fox Foundation for Parkinson’s Research, Reflections Initiative, Let’s Win Pancreatic Cancer, and Sickle Cell Disease Association of America, to help their patients find matching clinical trials.

Learn more about our clinical trial finder in the latest blog post here.

Increased clinical trial accessibility with simplified clinical trial information

Complex medical language in clinical trial listings often makes it difficult for patients to understand eligibility criteria, study procedures, and potential benefits. To solve this, we have integrated an AI-powered trial listing simplification feature that rewrites complex trial descriptions into easy-to-understand language.

Remote Data Collection & Decentralized Trials

Our advanced remote data collection technology enables decentralized clinical trials, allowing participants to contribute data from the comfort of their homes. This reduces the burden of frequent site visits and helps overcome logistical barriers like travel expenses, long hours, and geographic limitations. With secure and seamless data transfer, we enhance compliance and improve the efficiency of trials.

Connecting Patients to Breakthrough Treatments

From AI-powered trial finders and simplified study descriptions to remote data collection, we are making it easier than ever for participants to explore and enroll in clinical trials. By enhancing accessibility and awareness, we empower patients to take an active role in their healthcare journey while helping researchers accelerate medical advancements.

If you are interested in participating in a clinical trial, you can explore clinical trials here or sign up for our Volunteer Registry to get notifications on the latest clinical trials.