Meet the Voices Behind the Shift

Vincent Del Gaizo, Director of Strategic Partnerships & Patient Engagement and Erin Moriarty Wade, Director of Communications & Marketing at the Childhood Arthritis and Rheumatology Research Alliance (CARRA), are helping lead one of the most patient-integrated research models in healthcare. Swaay.Health sat down with Wade and Del Gaizo to uncover the secret behind CARRA’s uniquely collaborative approach.

Key Takeaways

Lived experience isn’t a focus group—it’s infrastructure. If patients and families aren’t helping shape your strategy, you’re missing insights that could transform it. At CARRA, families aren’t just “heard”—they co-author medical studies, vote on grants, and guide research priorities. If your research can’t recruit, it can’t deliver. CARRA avoids trial-and-error study designs by pressure-testing research ideas with real families before they launch. That means better recruitment, faster insights, and less wasted effort. Engagement is a lifeline. Healthcare leaders often hesitate to involve patients, thinking they’re “too overwhelmed.” But for families, contributing can be the one empowering part of a painful experience—and a way to make the system better for others. Patients Get a Vote with CARRA

CARRA doesn’t just invite families to participate—they embed them throughout the organization in roles that carry real decision-making power. Patients and parents help design studies, co-author journal articles, and even serve as grant reviewers deciding how hundreds of thousands of dollars in research funding should be spent.

As Del Gaizo explained, “We have families that are involved in every stage of the research life cycle from ideation to dissemination.”

“It’s not just about giving the patient or the parent a seat at the table. It’s about giving them a vote,” added Wade.

CARRA’s model of shared ownership has helped build deeper trust, better research alignment, and a stronger sense of mission for families and the organization itself.

Research Designed for Real Families

Rare disease research is more about significance versus traditional medical research where the focus is often on scale. With too few patients to waste time on unproductive studies, CARRA builds research with families from the beginning. That means asking upfront: is this worth studying? Would families even enroll?

“We need to make sure that our projects have low barriers and are relevant to the patient community because we can’t do everything,” said Del Gaizo. “Our approach is to answer the most important questions first. And by including families, we’re designing more efficient studies that are easier to recruit for.”

By treating patients as co-designers, CARRA’s studies have better data, are quicker and more relevant.

When Done Right, Engagement Isn’t a Burden

Too often, clinicians and marketers hesitate to engage patients more deeply, fearing it will overwhelm them. In contrast, families at CARRA are invited to meaningfully contribute to potentially life-changing research. This can become the first empowering step in their difficult journey.

“It wasn’t at all a burden [to be asked to participate],” said Wade. “It was really a joy and an opportunity that I was so grateful for.” Del Gaizo echoed that sentiment, “It gave me the opportunity to make it a better place for my son and kids like him, without having to go to medical school.”

That spirit of purposeful inclusion has turned engagement into a source of healing and momentum for individual families and for CARRA.

What Happens When You Make Patients Part of the Process

By embedding families into research design, funding decisions, and day-to-day operations, CARRA has created a structure that works better for everyone involved. The result is more relevant studies, stronger recruitment, and a deep level of trust between researchers and the communities they serve. It is a model for how to include patient voices to drive both scientific progress and organizational resilience.

Learn more about CARRA at https://carragroup.org/