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Clinical research is critical to discovering life-changing therapies for patients, especially in the cancer space. Knowing this, clinical trial participation in the cancer patient community is imperative. However, some patients, as well as their families, may have reservations about participating. A recent study published on JAMA Network Open aimed to uncover the motives behind cancer patients’ willingness, or lack thereof, to participate in clinical trials.1
“These findings underscore the importance of patient education, transparent communication, and trust-building by health care professionals to address barriers and enhance participation in clinical trials, ultimately advancing cancer research and improving patient outcomes,” the study authors wrote. “Clinical trials are vital for advancing cancer treatments and improving patient outcomes. Understanding the factors that influence participants’ decision-making is critical for enhancing trial recruitment.”
The study included insights from 978 patients with cancer and their relatives. It was conducted between April 2020 and April 2021 via face-to-face questionnaires administered by physicians across 6 tertiary hospital medical oncology departments in Turkey.
“We conducted a cross-sectional survey to assess the attitudes and perceptions of patients with cancer and their family caregivers regarding participation in clinical trials. The study specifically targeted individuals diagnosed with cancer, as well as their family members, to gain a comprehensive understanding of attitudes toward clinical trial participation,” the authors wrote.
According to the results, 485 participants were male and 479 female. Of these, 578 were patients with cancer and 382 were family members. Prior clinical trial experience was reported by 174 participants, and 428 expressed a willingness to participate in clinical trials. A deeper dive into the data shows participants well-informed about clinical trials showed a higher willingness to participate compared to those with no knowledge. Factors such as the development of the participants’ respective cities, education level, monthly income, and prior cancer treatment also played a role in their willingness to participate.
The most notable motivations by patients willing to participate were potential personal health benefits and access to new treatments. Meanwhile, primary concerns included potential adverse effects, feeling like a “test subject,” and the risk of receiving a placebo.
“This study found significant gaps in knowledge and persistent concerns about clinical trials among patients with cancer and their relatives in Turkey, affecting their willingness to participate. Nearly half of the participants expressed a readiness to engage in clinical trials, yet barriers, such as perceived risks, fear of exploitation, and limited understanding, remain prominent,” the authors wrote of their findings.
As proper education on clinical trial participation has been a persistent challenge for the industry, the authors also highlighted the participants’ preferred sources of information for being enrolled in a clinical trial. A significant majority (84.3%) would seek information from their attending oncologist, 22.2% would prefer information from their family physician, 47.4% would prefer information from clinical trial doctors, and 12.9% prefer information from other health care professionals. Only a minority of participants stated they would prefer to get their information from media outlets such as the internet, disease forums, and social media.
“Our findings underscore the importance of patient-centered education and transparent communication about the safety and benefits of clinical trials. Addressing these factors could enhance trial participation rates, leading to more inclusive and representative cancer research that ultimately improves patient outcomes,” the authors concluded.
Reference
1. Kubilay Tolunay P, Erol C, Kahraman S, et al. Understanding of Clinical Trials Among Patients With Cancer and Their Relatives. JAMA Netw Open. 2025;8(1):e2457020. doi:10.1001/jamanetworkopen.2024.57020