Editor: Dave Hine, Senior Director, Solutions Consulting at Suvoda
Snapshot
We recently partnered with CISCRP (Center for Information and Study on Clinical Research Participation) to explore their 2025 Perceptions and Insights Study—a global survey of over 12,800 respondents.1
I joined Rachel Melloul, Senior Project Manager at CISCRP, and Andrés Escallón, Vice President of eCOA Strategy at Suvoda in an engaging webinar to discuss the implications of these findings for sponsors, CROs, and sites working to enhance patient recruitment and retention in clinical trials.
What stood out to me was how consistently the data pointed toward one theme: clinical trial participants want options that minimize disruption and address the logistical and financial barriers to clinical trial participation. Three insights, in particular, can help us rethink patient burden in clinical trials.
When asked to rate the level of burden of different aspects of their participation, clinical trial participants were most likely to cite biopsy procedures as burdensome (34% indicating ‘somewhat’ or ‘very burdensome’). What surprised me was that “travel to the clinic” came in a close second (28% indicating ‘somewhat’ or ‘very burdensome’), speaking to how cumbersome travel logistics are for participants.
The study also showed that 59% of participants traveled 30 minutes or more one way to their study visits. As Rachel noted during the webinar, convenience consistently shows up as a top driver of patient willingness to participate.
In rare disease or oncology trials in particular, participants often travel hours to specialized centers, making this survey finding even more significant. When conducting qualitative research projects focused on better understanding the needs and preferences of oncology patients, CISCRP often hears that reducing travel distance, having home nursing visits, and receiving transportation support would make trials much less disruptive.
For me, this reinforces why Suvoda is committed to providing support to patients, their caregivers, and sites for some of the most burdensome aspects of a trial like travel.
One of the more surprising findings from the CISCRP survey was how inconsistently clinical trial participants are compensated for the time they contribute to advancing medical research. Nearly half of participants in Europe (49%) reported receiving no compensation at all, compared with 13–20% in other world regions. At the same time, “receiving compensation for my time” ranked second when participants were asked what would make trials less disruptive, highlighting a clear gap between effort and recognition.
When participants are compensated, the form of payment often doesn’t align with what they find most useful. When CISCRP asked participants how they were compensated, the top way participants received compensation was through check (20% indicating). But cash, digital wallets, direct pay and pre-paid debit cards were all rated more convenient compared to checks.
This disconnect matters. As Andrés noted during the webinar, “You may have people who are living paycheck to paycheck… Cash is gold to them.” His point drives home the importance of what we saw in the data: participants need to be reimbursed for expenses right away—or better yet, don’t have out-of-pocket, study-related expenses in the first place.
When participants rated helpful services, “supportive services for caregivers” ranked third, behind only home visits and transportation. Yet caregiver burden rarely gets the same attention in protocol design.
Andrés made a compelling case: “Caregivers, especially when you consider pediatric indications, are just as important as the participant. These are folks who, in fact, might even be taking on more burden to help the participant be in the trial.”
When we think of caregivers, such as parents in pediatric studies or family members helping those with mobility challenges, the logistics they shoulder may be overlooked, including:
From a trial design perspective, this means we need to think beyond the direct participant. For example, trial teams should also consider whether appointment reminders are accessible to caregivers and if visit schedules and support services accommodate their constraints. The survey suggests that addressing these questions directly has a significant impact on retention.
These themes point to the same underlying need: options to choose from. The Suvoda Platform addresses the critical moments that impact patient recruitment and retention, like consent, randomization, travel coordination, payments, and diary completion, all with flexibility built in to support patients and sites.
With Suvoda’s suite of software products and user-friendly patient app, participants can engage with their trial through their own smartphones or provisioned devices. Sites can seamlessly manage the patient experience, such as making payments and initiating travel accommodations, and caregivers are acknowledged and supported as active users.
The CISCRP survey reinforces what I've believed for a long time: when you listen to what clinical trial participants are telling you, the path forward becomes clearer.
Dave Hine |
Rachel Melloul |
Andrés Escallón |
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