Continuing on Day 2 of this year’s SCOPE Summit in Orlando, a noteworthy session examined ways to better recognize and support clinical trial participants. Titled “Setting the Tone for the Patient and Site Journey,” the session was headlined by Steve Rosenberg, CEO of uMotif and a 20-year industry veteran.
Kicking off the session, Rosenberg shared his belief that patients in clinical trials don’t receive the recognition they deserve, emphasizing that they should be treated as heroes.
“I’ve always believed that patients get the short end of the stick,” he explained. “They’re not treated like the heroes that they are. They don’t board planes first. That’s when it hit me—military personnel board planes first, but what about clinical trial participants who are sacrificing both their time and bodies for the greater good?”
Rosenberg then presented several market trends shaping the clinical trial landscape. Current data indicates that the industry is expanding by 6.5% annually, with electronic patient-reported outcomes (ePRO) growing at an estimated 16%. Additionally, involvement from patient advocacy groups has increased, patient burdens have intensified, and regulatory requirements from the FDA have become more stringent in recent years.
“A number of organizations are now measuring patient burden,” he said. “The burden has been rising. It’s gone down slightly in oncology, but it has risen significantly in other therapeutic areas. Some of the key factors driving this burden include extensive travel time, drug side effects, and the increasing number of questionnaires patients must complete.”
He then stressed that these challenges are not temporary; in fact, they are worsening. Clinical trial protocols are becoming more complex, and questionnaires are being used more frequently.
“I do think there’s a tendency to ask more questions than are truly necessary and collect more data than what is actually needed,” said Rosenberg. “But that needs to be balanced with what patient sites can realistically handle. As a result of these burdens, patient dropout rates are rising—not just due to clinical or medical concerns but because patients are making the choice to leave. Excessive time demands, poor communication with trial sites, and cumbersome procedures all contribute to participants withdrawing.”
Shifting the discussion toward solutions, Rosenberg highlighted how technology can play a role in improving patient engagement and retention. He introduced uMotif’s partnership with CLIN One as a key example, explaining how the collaboration aims to enhance study coordination, boost patient engagement, and ultimately prevent dropouts.
“We have the opportunity to team up—and allow sponsors and sites to collaborate—to improve the patient experience,” he explained.
According to Rosenberg, the combined platforms of both organizations will offer centralized tools to track protocol details, schedule visits, and manage patient interactions. These tools include digital reminders, study-related content, and real-time communication between patients and sites. Additionally, analytics-driven alerts will help trial sites identify at-risk patients and intervene before they drop out.
“It’s more about having the right information available so sites can effectively manage patients as they come in,” he stated. “Sponsors like to see what’s happening, and now they can track what they’re putting into the site and how patients are responding.”
In his closing remarks, Rosenberg emphasized that achieving true patient-centricity requires a collaborative effort—sponsors, sites, and technology providers must work together to address individual patient motivations and needs. He also challenged the industry to move beyond standardization and acknowledge the deeply personal reasons why people choose to participate in clinical trials.
“We need to recognize the individuality of each person after they complete a trial,” he concluded.