To Pay or Not to Pay: Researchers Grapple with Implications of Reimbursing Study Participants
October 1, 2023 4 minutes read
Researchers often face challenges in recruiting enough people to meet enrollment criteria for clinical trials. At the same time, investigators need to recruit more diverse study populations. Many are finding that paying participants can help meet both goals — while fulfilling ethical obligations to participants.
“The consensus is that payment is a normal part of research practice. But there are some cases where people say paying participants too much is unethical,” says Brandon Brown, MPH, PhD, professor of social medicine, population, and public health at UC Riverside School of Medicine.
Pushback on paying participants comes from both researchers and IRBs. From the researcher’s perspective, concerns revolve around budgetary limitations and how much they can afford to pay. “IRBs are generally more concerned about payment amounts causing undue influence on participation,” Brown notes.
According to Holly Fernandez Lynch, JD, MBe, “payment is not coercive because it involves no threat. And it is usually not unduly influential.”
If the research study is ethically acceptable, which it should be, then offering payment does not make it ethically unacceptable. “In fact, it can be ethically problematic not to pay participants fairly,” asserts Fernandez Lynch, assistant professor of medical ethics at the University of Pennsylvania.
Brown seldom sees studies that do not pay participants. The exception is small-budget (or no-budget) studies conducted by students or other groups without funding for the research. For other investigators, the question is not whether to pay participants, but how much to pay. Currently, there are no clear guidelines to determine appropriate payment amounts. “Having access to previous payment data would be useful — at the institution, or across institutions — based on the study type, risk, and duration,” Brown says.
One option is for researchers to ask participants what they deem is fair to participate in the study. Investigators could consider those responses, along with any available data on what study authors have paid people in the past. “We in research ask a great deal from study participants. We often offer little to them in terms of direct benefits,” Brown observes.
Brown would like to see researchers ask two questions when making payment decisions: Are you paying your participants enough? Does the payment amount show respect for participants’ time? “It’s time we think more about underpayment than the most common worry of overpayment,” Brown asserts.
Some researchers propose a minimum wage model for hourly payment to participants. Brown sees this as insufficient. “The research contribution of those who provide their perspectives, their medical data, their tissue, and sometimes their lives deserves more than minimum wage,” he says.
IRBs can play a role based on the obligation to protect study participants. IRB members often worry about undue influence and coercion if participants are paid excessively high amounts. “But not often enough in their review [of study protocols] do they worry about payment that is too low,” Brown says.
Brown sits on the IRB at his own institution, and has seen IRB members use checklists that remind people to examine undue influence and coercion if payments are made. However, IRB checklists do not include underpayment concerns or the need to respect participants’ time. Brown would like to see IRB members ask: Is the payment amount fair and commensurate with people’s time and effort?
“It is paternalistic of us, as researchers, to determine what amount is too high, to the point that it would overwhelm people’s decision-making capacity,” Brown says.
Once the amount is settled, researchers must decide whether to pay with cash or gift cards. In Brown’s view, cash is best since it is accessible to everyone. If researchers are planning to use gift cards, they should engage the participant population first to see what card they would be able to use, according to Brown.
Next, researchers need to address how to discuss payment during the informed consent process. “Everything needs to be specified and clear,” Brown says.
Vague information on payment arrangements makes it likely misunderstandings will occur. For example, consent forms should specify the payment schedule (e.g., how much payment for visit 1, how much payment for visit 2, and so on).
Researchers also must be clear on what happens if the participant decides to drop out of the study for any reason. Investigators should not require participants to complete a longitudinal project with multiple visits to receive a single payment at the conclusion of the study, according to Brown. That would affect the voluntariness of the person’s participation. “They may hang on to get to that payment, even if they want to drop out of the study,” Brown says. “That’s why most IRBs don’t think it’s right to withhold payment until the very end of a multiple-visit study.”
Not all studies go forward as planned. The consent form should specify any payment amounts participants will receive if the study ends early. For example, the data safety and monitoring board might decide to end the study because of positive or negative effects of the intervention. If a study closes after the recruitment visit, and researchers agreed to pay participants for that visit, participants should be paid as promised, Brown says.
While paying people can help meet recruitment goals, it is not the only way to do so. Community engagement also is a pivotal factor. “Developing a research project that matters to a community, that the community is invested in, may be even more important,” Brown offers.
If the study has a bad reputation or does not resonate with the people it is meant to recruit, then researchers are unlikely to succeed with enrollment, regardless of payment. “This is yet another reason to engage the participant community beforehand, and to have community members on the study team as partners in the research process,” Brown adds.
Pushback on paying participants comes from both researchers and IRBs. From the researcher’s perspective, concerns revolve around budgetary limitations and how much they can afford to pay. IRBs generally are more concerned about payment amounts causing undue influence on participation.
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