SCOPE Summit 2025 Opening Keynote Panel: What Do Real Patients Actually Talk About?

Image Credit: Andy Studna

The opening keynote panel on day 1 of SCOPE (Summit for Clinical Operations Executives) Summit 2025 focused on the main stakeholder in clinical trials—patients. Titled, “What Do Real Patients Actually Talk About?” the interactive panel discussed the importance of accurately representing patient voices, particularly those from underrepresented communities, in clinical research.

The discussion was moderated by T. Hephner, CRO, Inspire. He was joined by Emily McCormack, social media director, New York Blood Center; Quynh Tran, MPH, director of patient activation, Cystic Fibrosis Foundation; Fabian Sandoval, PhD, president & CEO, Emerson Clinical Research Institute; and Darious Davis, senior director of business development, CenExel.

Hephner began by asking the panel to identify some of the common misconceptions about patient stories shared at events, and how the clinical research industry can ensure that these stories are representative of the broader patient community. Tran responded by highlighting some of the misconceptions around cystic fibrosis.

“With cystic fibrosis, a rare disease that affects around 40,000 people in the United States, one of the biggest misperceptions is that they're all white and have European descents. Not true. We now know that cystic fibrosis can affect people of every racial, ethnic background, and to address this misperception, we are being very deliberate in showing people of different racial and ethnic groups, particularly those from Black communities and Hispanic communities, as both patients with the disease as well as the researchers and clinicians and those participating in clinical trials on our media channels,” she said.

Davis followed by emphasizing the need to ensure each patient story is accurate, but singular, to avoid any misconceptions around an entire patient community. On top of accuracy, stories of patients who didn’t succeed in a clinical trial must be shared as well to give a more complete picture. The second part to this is actively seeking diverse patient voices who might not typically be in the spotlight.

“Incorporate the data or qualitative trends from patient feedback alongside individual stories to illustrate commonalities and variances within the broader patient community,” Davis said.

The panel then moved into a discussion on understanding disease burden and the unmet needs from patients themselves. Hephner asked, “What are the key differences between the day-to-day realities of patients with chronic or rare diseases and the narrative often heard in public forms, and how can we break down barriers to amplify the voices of those who are less often heard?”

Sandoval answered by highlighting the need to bring patients back into a safe space. As conditions of chronic diseases continue to evolve, healthcare providers must be honest in communicating to patients what these conditions are and how to go about resolving them.

“I can give you first-hand knowledge of patients not wanting to do anything because of fear, and it's important for us to talk about the elephant in the room, and what are we going to do as an organization, as a society, as a research group, to bring our patients back into a safe space?” he said.

Throughout the entire discussion, McCormack chimed in on the importance of social media and its role in accurately sharing patient voices. Social media teams can identify what patients are actually talking about and get insights into the burdens they are facing such as travel.

“It is wonderful to have those loud outpatient advocates who are so gracious with sharing their stories and their experiences, but it's really making sure that you are scaling back and understanding that that is just one experience,” she said. “I think that's where social listening really comes into play.”

In its concluding remarks, the panel shared its thoughts about the future of patient engagement. Davis brought up the idea of technology innovation acting as an ally in widening the reach for patients. Tran highlighted the importance of creating a safe space in which patients can openly and honestly share unique challenges in their journeys with their clinicians.

“Patients don't have a choice sometimes, especially a sick patient,” Sandoval said. “What do they do when they pick up the phone? When they look at their app? They're looking for hope.”

Reference

Hephner T, McCormack E, Tran Q, Sandoval F, Davis D. What Do Real Patients Actually Talk About? February 3, 2025. SCOPE Summit 2025.