How Do People Decide to Join Clinical Trials?
Understanding what shapes research participation decisions — from trust and information to everyday practical realities.
This post includes the full transcript of this week’s Beyond the Buzz episode, followed by the clarity poll and full evidence.
🎧INTRO
Welcome to Beyond the Buzz — where curiosity meets clarity.
I’m Dr. Tara Moroz, scientist and communicator with decades of experience translating complex human research into clear, evidence-informed insight.
Today we’re looking at how people decide whether to participate in clinical research — something more people are encountering than ever before — a decision that sits at the intersection of science, personal health, and the growing ways technology connects people to research opportunities.
Many people first encounter research participation through an invitation — from a clinic, a patient organization, a website, or sometimes even social media — or after a diagnosis, when they begin looking into treatment advances.
For some, that invitation sparks curiosity. For others, it raises questions about safety, time commitments, or whether participation is the right choice.
To explore how people think about these decisions, I spoke with Wes Michael, founder of Rare Patient Voice — an organization that connects patients and care partners with opportunities to participate in healthcare research.
Let’s take a closer look together — starting with what’s driving the buzz.
📊THE BUZZ
Clinical research depends on people choosing to participate, yet participation remains relatively uncommon.
One example comes from a large U.S. survey of cancer survivors, which found that many people know about clinical trials but far fewer ever join one. Nearly 78% said they had some knowledge of clinical trials, but only about 15% had discussed them with a doctor, and fewer than 8% had participated. (H1)
That gap between awareness and participation creates a practical challenge for researchers.
Clinical studies rely on volunteers, and many trials struggle to enroll enough participants to answer their research questions. (E2)
Because recruitment is so important, an entire industry has developed to help studies find participants. The global clinical trial patient recruitment services market was valued at almost 11 billion U.S. dollars in 2024 and is projected to reach almost 23 billion dollars by 2033. (H2)
As more systems connect patients with research opportunities, more people may encounter invitations to participate in studies.
But seeing an invitation is only the first step.
That raises an important question: when people encounter an invitation to participate in research, what influences their decision to take part — or not?
🧾RECEIPT CHECK
Let’s check the evidence — our kind of receipt check.
This is the moment to pause and ask the questions that matter — what’s the evidence, what’s the source, and how do we know?
🔬WHAT THE EVIDENCE SHOWS
Here’s what the evidence shows about how people make these decisions.
Researchers often study participation using systematic reviews — studies that summarize findings across many individual research papers. (E1)
Across these reviews, several factors consistently influence whether people consider participating in research. (E1)(E4)
Trust plays an important role. People are more likely to consider research when they trust the researchers, healthcare providers, or institutions involved. (E1)
Clear information also matters. Potential participants want understandable explanations about what the study involves, including possible benefits, risks, and time commitments. (E2)
Practical considerations can also influence decisions. Travel requirements, time demands, or complex procedures may make participation difficult for some volunteers. (E2)
Personal motivations also shape decisions. Some participants hope for access to new treatments, while others want to contribute to science or help future patients with the same condition. (E3)
Concerns can influence decisions too. People sometimes worry about safety, side effects, or being assigned to a comparison group rather than receiving a new treatment. (E1)
Research also suggests that decision-support tools may help people evaluate these choices. Clear information guides or structured discussions with clinicians can support people in understanding their options. (E5)
Importantly, these tools are designed to support informed decisions — not to persuade people to participate. (E5)
🧠WHY THIS TREND RESONATES
So why does this trend resonate?
For many people, invitations to participate in research are unfamiliar experiences.
When those invitations appear, people often weigh several considerations at once: trust, safety, time, and whether participation aligns with their values.
At the same time, some people feel motivated by the opportunity to contribute to scientific progress or help others facing similar health challenges. (E3)
These mixed motivations help explain why participation decisions can feel personal and complex.
Research suggests people rarely base these decisions on a single factor.
So what does that look like in real life?
🧭THE TAKEAWAY and GUEST INSIGHTS
To explore that, I spoke with Wes Michael from Rare Patient Voice, who regularly hears from patients and care partners considering research participation.
Wes, when people first encounter an opportunity to participate in a research study, what questions or concerns do they most often raise?
[Wes: They certainly want to know if it applies to them or their loved one’s condition. But a key area that is often overlooked is, they want to know how they can fit the trial into their everyday life. In addition to being a patient or caregiver, they’re moms and dads, they have jobs and interests. They don’t want their lives turned upside down. They have to figure out how to make the trial a part of their life without giving up the rest of their life.]
Research also shows that motivations vary widely — from curiosity about new treatments to a desire to contribute to science. (E3)
From your conversations with patients and care partners, what do people often say they gain — or hope to gain — from sharing their experiences in research?
[Wes: They want those developing and marketing treatments to understand what they want and need. Sure, they want a cure, or an effective treatment, but they also want to enjoy some quality of life. Many have had very difficult experiences, getting misdiagnosed or being ignored, and they want their story to be heard by those who are making the decisions.]
And for someone who encounters a study invitation but isn’t sure what to do next, what advice would you offer when deciding whether participation feels right for them?
[Wes: They need to feel free to ask any questions they have and not leave until they are satisfied with answers that they can understand. They should trust their gut – are they getting the right vibes that this feels right for them? Also, they should talk with others they may know in the same disease community about the research. Compare their thoughts with others as they make a decision.]
Thanks Wes!
So what’s the takeaway?
Decisions about research participation are really decisions about health and how people engage with science — shaped by factors like trust, clear information, practical feasibility, and personal motivations. (E1)(E2)(E4)
If you’re curious about research opportunities, a few starting points can help.
Public registries list clinical studies searchable by condition, location, or treatment type. One example is ClinicalTrials.gov, a publicly accessible database where studies are registered and described — although these platforms are often designed with researchers in mind and can be difficult to navigate. In many cases, a healthcare provider can help identify studies that may be relevant.
Rare Patient Voice — the organization Wes founded — is one example of a community that connects patients and care partners with research opportunities.
When evaluating a study invitation, look for clear explanations of the study’s purpose, what participation involves, possible risks and benefits, and how your data will be used — and take time to ask questions or go back over anything that isn’t clear.
Your Evidence Edit Moment:
Most people think deciding whether to participate in research is mainly about the science.
But strong evidence from multiple systematic reviews shows that people weigh several factors together — including trust, clear information, practical barriers, and personal motivations. (E1)(E4)
In reality, participation decisions are rarely about science alone.
They’re also shaped by everyday realities like time, logistics, safety concerns, and personal values. (E2)(E3)
Learning more can help you decide whether participation feels right for you.
💭REFLECTION PROMPT
Something to reflect on…
If you were invited to participate in a clinical study, what information would help you feel comfortable making that decision?
📬OUTRO & CTA
If you found this useful, follow Beyond the Buzz and share it with a friend who likes a little science with their scroll.
You can explore the transcript, evidence, and this week’s clarity poll in The Evidence Edit.
Until next time, stay curious — and stay kind to your mind.
This is Beyond the Buzz — cutting through the hype, because evidence is empowering.
Next week: Do Detox Cleanses Actually Help Your Body?
📊 POLL
📚REFERENCES — What’s the Hype (H1–H#) / What’s the Evidence (E1–E#)
🔓 Open Access |🔒Paywalled
H1
HINTS. (2021). HINTS Brief 57 — Clinical Trial Knowledge, Discussion, and Participation Among Cancer Survivors. HINTS. https://hints.cancer.gov/docs/Briefs/HINTS_Brief_57.pdf 🔓
H2
Grand View Research. (2024). Clinical Trial Patient Recruitment Services Market Report. Grand View Research. https://www.grandviewresearch.com/industry-analysis/clinical-trial-patient-recruitment-services-market-report 🔓
E1
Rodríguez-Torres, E., González-Pérez, M. M., & Díaz-Pérez, C. (2021). Barriers and facilitators to the participation of subjects in clinical trials: An overview of reviews. Contemporary Clinical Trials Communications, 23, 100829. https://doi.org/10.1016/j.conctc.2021.100829 🔓
E2
Houghton, C., Dowling, M., Meskell, P., Hunter, A., Gardner, H., Conway, A., Treweek, S., Sutcliffe, K., Noyes, J., Devane, D., Nicholas, J. R., & Biesty, L. M. (2020). Factors that impact on recruitment to randomised trials in health care: a qualitative evidence synthesis. Cochrane Database of Systematic Reviews, 2020(10), MR000045. https://doi.org/10.1002/14651858.MR000045.pub2 🔓
E3
Dobra, R., Wilson, G., Matthews, J., Boeri, M., Elborn, S., Kee, F., Davies, J. C., & Madge, S. (2023). A systematic review to identify and collate factors influencing patient journeys through clinical trials. JRSM Open, 14(6), 20542704231166621. https://doi.org/10.1177/20542704231166621 🔓
E4
Knapp, P., Bower, P., Lidster, A., O’Hare, H., Ferreira Sol, L., Golder, S., Keyworth, C., Parker, A., & Sheridan, R. (2025). Why do patients take part in research? An updated overview of systematic reviews of psychosocial barriers and facilitators. Trials, 26(1), 174. https://doi.org/10.1186/s13063-025-08850-6 🔓
E5
Hersch, J., O’Hara, L., Juraskova, I., Laidsaar-Powell, R., Bartley, N., Gillies, K., Ballinger, M., Wang, W., & Butow, P. (2025). Interventions to support patient decision making about taking part in health research: A systematic review. Patient Education and Counseling, 141, 109339. https://doi.org/10.1016/j.pec.2025.109339 🔓
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