Meet Mei. Mei is a healthy volunteer, enrolling in a Phase 1 clinical trial. Mei has no underlying condition being studied, and does not expect to receive a therapeutic benefit. Instead, she agrees to spend several days at a research facility, undergo repeated blood draws, follow strict study protocols, and contribute her time to evaluating an investigational treatment. In exchange, Mei is eligible to receive several thousand dollars in compensation.
Meet Marvin. Marvin is a patient living with cancer, and enrolls in a clinical trial investigating a potential treatment for his cancer. Alongside his cancer, he must take the bus to the site, but he has no car, and the nearest bus stop is a 15 minute car ride from his house. Marvin must now attend additional appointments studying the cancer in the confines of this study (alongside his regular cancer check-ups), undergo testing, and sacrifice considerable amounts of time away from his job and family.
Marvin isn’t eligible for thousands of dollars of compensation, however. Unlike Mei, Marvin is compensated nothing beyond reimbursement for his expenses.
While this is just a mock example, this is resemblant of what occurs to thousands of clinical trial participants, nationwide. Why is there such a disparity in clinical trial compensation, particularly for patients living with the diseases being studied? While reimbursing expenses may seem fair, does it adequately recognize their time, sacrifices, and the invaluable clinical data they contribute? Are we overlooking the true value of the very patients making medical progress possible?
How Clinical Trial Compensation Works
Clinical research depends on individuals willing to participate in studies that investigate the safety, effectiveness, and potential benefits of medical treatments. Participation can involve anything from completing questionnaires and attending occasional appointments, to undergoing invasive procedures, repeated testing, or extended stays at research facilities. Depending on the focus of the study, participant involvement may vary drastically; the range of compensation, unfortunately, may not.
Compensation acknowledges the time, inconvenience, discomfort, and effort associated with these commitments. However, there is no universal federal payment schedule establishing how much participants must receive for individual visits, procedures, or completing a study. Instead, compensation is generally proposed by research sponsors and investigators and reviewed by Institutional Review Boards (IRBs), which are responsible for protecting the rights and welfare of research participants.
The U.S. Food and Drug Administration (FDA) recognizes payment for research participation as an acceptable practice, though it distinguishes financial compensation from the potential medical benefits of participating in a clinical trial. Payment is strictly considered a recruitment incentive, not a therapeutic benefit that offsets the risks of research. Essentially, higher pay scales cannot justify nor excuse hazardous research practices or conditions.
IRBs evaluate proposed payment amounts, schedules, and distribution methods to determine whether arrangements are fair and whether they could exert undue influence over a participant’s decision to enroll or remain in a study. Compensation should generally accrue as participation progresses, rather than depending entirely on trial completion.
Part of compensation is understanding the key differentiators between reimbursement, compensation, and incentives. Reimbursement refers to any repayment of reasonable expenses incurred through participation (transportation, parking, lodging, related travel costs). Compensation refers to any payment recognizing the participant’s time, inconvenience, discomfort, and other demands of research participation. Incentives refer to any financial offers intended to encourage enrollment or continued participation, which requires careful ethical considerations. These distinctions dictate how funds are allocated on an individual basis. Reimbursing a patient for a $50 trip to a research facility prevents an additional expense, but it does not necessarily compensate them for the hours spent traveling, arranging potential pet/childcare, missing work, or undergoing procedures.
For a healthy participant with a lack of socioeconomic barriers (income, housing, transportation) such as Mei, simple reimbursement may be the only fair, accurate, and therefore applicable form of payment. However, for Marvin, simple reimbursement does not account for additional time spent away from his family and workplace.
Having the same level of reimbursement for all clinical trial participants may seem “fair” when in reality, it simply is not.
Why Is There Such A Wide Range In Compensation?
Not all clinical trials require the same level of participation, and compensation naturally varies according to study design, duration, procedures, and participant responsibilities. A 2021 analysis of Phase 1 healthy-volunteer trials found that median compensation was $3,070, with individual study payments ranging from $150 to $13,000. Median compensation was approximately $196 per day of enrollment.
These amounts reflect the substantial commitments some early-phase studies require. Healthy volunteers may spend days or weeks in research facilities, receive investigational products without an expectation of therapeutic benefit, undergo repeated blood draws, and temporarily surrender considerable control over their daily routines. Compensation, particularly in these circumstances, recognizes that participation itself constitutes a meaningful contribution. Unfortunately, the calculation becomes more complicated when the participant is also a patient.
In disease-specific trials, particularly those investigating treatments for conditions participants already have, the possibility of receiving therapeutic benefit changes how participation may be perceived. Rather than focusing exclusively on what the participant contributes to research, attention can shift toward what the research might offer the participant. We argue that this introduces an ethical concern. Simply put, the possibility of receiving medical benefit does not eliminate the time, discomfort, financial obligations, or personal sacrifices associated with participating in research. Medical benefit should be deemed completely irrelevant when discussing compensating trial participants who are already patients. Their participation is no less important simply because they hope the investigational treatment may help them.
In fact, it could be argued that, when speaking with patients, only emphasizing potential medical benefit could come across as exploitation.
Are Patients Being Lowballed?
Clinical trials require substantial financial investment. Sponsors allocate resources toward study development, research infrastructure, regulatory compliance, and patient recruitment, particularly when eligible participants are difficult to identify. However, are any comparable efforts being made to recognize the financial and personal burdens experienced by the participants themselves?
A 2024 study examining 650 people with cancer, including 118 who had previously participated in a cancer clinical trial, found that 47% of trial participants reported experiencing financial hardship because of their participation. Among those reporting hardship; 71% identified travel-related expenses, 58% reported medical bills or insurance-related expenses, 40% reported dining expenses, and 40% reported housing-related expenses.
More than half of respondents reporting hardship indicated that they would need between $200 and $1,000 per month to offset trial-related costs. In this case, reimbursement does not nearly adequately cover the financial losses in which compensation would. Therefore, it is imperative to consider what participation is actually worth.
Recognizing differences between trial payouts does not mean every clinical trial should offer identical payments, nor does it diminish the meaningful contributions of healthy volunteers. Risk, procedures, duration, and objectives all differ depending on the study, and compensation must account for those differences, while remaining consistent with ethical standards and regulatory oversight. In addition, meaningful progress requires looking beyond whether a payment structure satisfies regulatory requirements, and asking whether it adequately considers the participants’ lived experience.
The key distinction between reimbursement and compensation lies in how each accounts for the burdens of participation. Reimbursement covers direct expenses, while compensation recognizes the additional time, commitments, and challenges patients may face. Together, they aim to ensure participants experience no net financial loss from taking part in a clinical trial.
Many more discussions regarding patient compensation need to be held. For example, should every payment structure for patient compensation prioritize compensation instead of reimbursement? Is there a way to have a universal payout system while also acknowledging the intricate details of every study and corresponding participant? How can we best empower participants who currently live with a disease, and want to receive equitable compensation for participating in a corresponding study?
We’ll continue this conversation in our next article and upcoming LinkedIn reels. Clinical trials cannot exist without participants, and truly valuing their contributions means having honest, good-faith discussions about how they are compensated.