CHOP’s Research Family Partners Are Shaping the Future of Pediatric Medicine

By Lauren Ingeno

As a parent of three children who have received care at Children’s Hospital of Philadelphia, Erica Evans never expected to work side by side with her family’s clinicians.

But since becoming a Research Family Partner in 2015, Evans has used her lived experiences to inform dozens of studies at all stages of the research process — from participant recruitment to data dissemination. 

CHOP’s Research Family Partners Program, which currently includes more than 275 caregivers and community members, offers a formalized way for families to help make pediatric research more relevant, ethical, and impactful. From reviewing study materials to sitting on advisory panels, Family Partners bring critical insight into what matters most to patients, their parents, and their caregivers. 

“Having this level of public input makes research more meaningful, builds trust in the community, and increases recruitment and retention,” said Heather Cathrall, Director of Clinical Trials Support Administration, who coordinates the program alongside Rosemary Laberee, a Senior Family Consultant. 

Bridging Science and Public Trust

Family Partners like Evans go through a virtual training and then are paired with researchers to provide input on how studies are designed, communicated, and executed. 

“I’ve been able to give researchers a perspective about how best to approach and build trust with African American communities, since there is historical trauma,” said Evans, who lives near Philadelphia. “Serving as a Family Partner has also been a way to say, ‘Thank you,’ to the CHOP family.”

The Research Family Partners team works closely with CHOP’s internal teams, offering training and tools to ensure that collaboration with families is meaningful and respectful. They turn research into a shared journey.

As a co-investigator on the Partnering to Achieve School Success (PASS) study, Evans said one of her key roles has been helping the study’s recruitment team communicate to prospective families.

The PASS study is testing whether an enhanced behavior therapy delivered in a primary care practice could more successfully manage symptoms of attention-deficit/hyperactivity disorder (ADHD) compared to usual treatment.

“Parents want to know what’s in it for them and their child,” Evans said. “I’ve helped craft messaging showing the benefits of this kind of research — that it teaches parents and caregivers how to best advocate for their child and their diagnosis.”

Transforming the Research Process

Psychologist Jennifer Mautone, PhD, who is leading the PASS study, said that Family Partners like Evans have been invaluable for CHOP research. In addition to helping her research team recruit and retain study participants, Family Partners have developed a PASS video resource series and given input on the study’s statistical analysis plan.

“Our family partners are not shy about telling us how it is — in a really good way,” said Dr. Mautone, Director of Primary Care Behavioral Health Research. “They help us stay grounded in how the science can be most meaningful to children and families.”

For Gregory Tasian, MD, an attending urologist, partnering with families and community members through the program has helped his team think more critically about how kidney research study findings are disseminated to research participants and their families.

“They want to know the, ‘So, what?’ What is the impact of this work? How is it going to change care? And they want to be able to receive that information from trusted sources,” Dr. Tasian said.

He described the experience as “transformational” and urges other investigators to embrace community engagement in clinical research. 

“When you sit down with Research Family Partners,” Dr. Tasian said,” you’re no longer thinking so narrowly and inherently limiting the impact of the work that could be done.”