As companies struggle to include a more diverse range of participants in clinical trials, a study from Civis Analytics found that nearly three in four non-participants would be open to enrolling in one.
After polling patients to determine their willingness to participate in a trial and their preferred method of hearing about them, Civis found 73% of respondents are open to participation, and that 7% had previously participated in a clinical trial.
The results show that there is a sizeable part of the population that can be persuaded to participate in clinical trials, which could help to enroll more diverse patients.
“Historically, clinical trials are underrepresented in terms of racial minorities and between males and females,” said Victor Ramirez, applied data scientist at Civis Analytics. “Usually you have more males participating in clinical trials and people who are generally healthier. You’ve got this disconnect. It’s hard to reach out to these different populations because historically they haven’t been represented.”
The survey also drilled down into contact preferences and thoughts on clinical trials by gender, race, age, income level, and health status. Of the 73% who are open to participating in trials, 21% are non-white, 36% are age 50 or older, and 86% self-reported that they are in less than excellent health.
The Civis survey polled 4,922 adults in the U.S. in November 2018, focusing on their attitudes about medical research. Civis began the study to address under-recruitment for clinical trials. According to one study, more than $2 billion was wasted on trials that were cancelled due to a lack of participants between 2006 and 2010.
Not having underrepresented groups in clinical trials can also limit the generalizability of the findings across racial, ethnic, and age groups, according to another study.
Civis’ survey highlighted messages that could work to recruit people of different backgrounds. Across gender and race, 80% or more said it is important to be compensated for participating in a trial. Nearly all respondents said trials are important for finding new treatments, including 90% of Asian respondents, 83% of black respondents, and 81% of Hispanic respondents.
Respondents have less trust in the medical research organizations and pharmaceutical companies behind clinical trials. Most, when asked if those entities had the best intentions for trial participants, answered “neutral.”
A large percentage indicated they distrust pharma companies: 11% disagreed with the statement that pharma has the best intentions for participants. Those results suggested that language highlighting the role of pharma and medical research organizations in recruitment messages could prevent people from enrolling.
Patients most prefer (44%) being contacted about a trial via direct mail, which Ramirez said he found surprising. Thirty-three percent of patients said they like to hear about trials from their doctors, and another 33% said they prefer to get information from a website.
Ramirez said privacy is likely one reason that patients prefer letters or conversations with a doctor to learn about trials. “For something sensitive like clinical trials, where the process is kind of personal, you want a personal channel to reach out to you,” he said.
Many underrepresented groups don’t participate in trials because of mistrust of medical-research companies, but tying trial information to a trusted source could help overcome that barrier, said Rishi Guharay, social science project coordinator at Civis.
“Historically, mistrust is one of the most crucial barriers to participation,” she said. “You can see by the second method [of contact] chosen that people really trust their providers and the information coming from them. Linking these offers to someone that is a trusted individual could boost recruitment.”