Measuring Barriers to Improve Enrollment and Retention

In a recent video interview with Applied Clinical Trials, Shanthi Sivendran, MD, MSCR, MBA, senior vice president for cancer care support at the American Cancer Society, discussed the national expansion of the organization’s Access to Clinical Trials and Support (ACTS) program and its implications for improving cancer trial access and equity. Sivendran explained how the program addresses persistent barriers to trial participation—including geography, transportation, lodging, financial burden, and limited awareness—through an end-to-end model that combines education, navigation, social support, and AI-enabled trial matching. She highlighted early utilization data from the program’s initial regional launch, underscoring the scale and complexity of patient-identified barriers, and emphasized the importance of integrating support services with precision trial matching. Sivendran also addressed broader industry challenges, including trial decentralization, narrative shifts around clinical research, and the need for more representative trial populations to ensure innovation reaches patients most affected by cancer.

The interview transcript was lightly edited for clarity.

ACT: How important are support services like transportation and lodging in boosting enrollment and retention in cancer trials?

Sivendran: Yeah, great question. I think they’re really important. And so let me just give you some numbers, just from our program in the few short months that it’s been open.

So from the end of February to the end of November of this year, we’ve had over 1,300 patients, caregivers, or healthcare professionals contact us across the United States that are interested. So that’s a robust number in such a short amount of time.

But I think the number that really struck me is that of those people, they have identified almost 2,500 individual barriers that are preventing them from getting the care that they need or getting them to clinical trials. So 2,500 different barriers that patients experience on a daily basis.

And you’re just trying to survive your day, and then you’re thinking, how am I going to eat, or how am I going to get to my appointment?

And the highest reported barriers that we saw were financial barriers, transportation barriers, lodging barriers, and then just the emotional burden of going through a cancer journey.

And so those were the top ones that we saw. And to me, the fact that people are reaching out not just to get their trial matches but to help alleviate those burdens is really telling about the critical importance of addressing those things to move the needle in clinical trials.