Office of Health Equity Research Youth Advisory Board Welcomes New Faculty Director

As year three for the Office of Health Equity Research’s Health Equity Youth Advisors (HEYA) Board comes to a close, an exciting new phase begins under the leadership of Michael Mattiucci, MD, MPH. The new faculty director for the HEYA Board joined University of Rochester Medicine as a pediatric physician in September 2025 and quickly found his way to the Youth Advisory Board. As a Rochester native who attended medical school at the University of Rochester and recently returned after completing a fellowship in Denver, Mattiucci felt an immediate connection to both the institution and the program. 

Mattiucci began attending quarterly HEYA meetings in an advisory capacity last year and is transitioning into the role of faculty director over the summer. “I’m grateful for the strong foundation that faculty directors Arielle Sheftall, PhD, and Traci Terrance, PhD, established since the inception of the Board in 2023,” said Mattiucci. “They nurtured the development of the fledgling program and really got it off the ground. Support from our Center’s director, Edith Williams, MS, PhD, has also been critical. Edith was the guiding force behind creating the HEYA Board and continues to assist each year with the process of selecting new members.”

Mattiucci is most impressed by the engagement he sees from HEYA Board Members. “It can be really challenging to wrangle 15 adolescents’ schedules to come together for an evening at the medical campus, but the number of youth who show up for each meeting, and the level of engagement during the meetings, has been great,” Mattiucci said.

“Nothing about us, without us.”

The HEYA Board was formed to bridge the gap between researchers, medical professionals, and the lived experience of the younger populations they serve. While clinicians and researchers bring years of education and expertise, Mattiucci emphasizes that their knowledge must be augmented by input from the community.

“Research can often become very technical, which can lead to a lack of connection to the community and the people the research will actually impact,” he explained. “If we give young people the space to speak up and share their minds, they can really guide the work. The biggest impact that we can make is to ensure that young people are involved in all steps of healthcare and research that affects them. As the saying goes, ‘Nothing about us, without us.’”

Mattiucci believes his enthusiasm for working with youth is inspired by an experience he had as a high school senior. He participated in the New Visions Medical Careers Program through BOCES and spent half of each school day in a hospital. There, he gained hands-on experience in patient care and research, which profoundly shaped his future.

“It showed me that as a young person, I could have a voice and make an impact,” he said. “We don’t often regard young people’s experiences as expertise, but that’s really what it is. It is truly an expertise that they can bring to the table.”

Since its inception in 2023, the HEYA Board has made meaningful contributions to research efforts at URochester Medicine. For example, Jessica Iyer, MBBCh, MHS, a fellow in the Department of Pediatrics, shared a series of youth recruitment posters for a sickle cell disease study with the group. Youth can be difficult to recruit for clinical research, so this type of feedback is invaluable. The students evaluated the designs and offered candid feedback. They identified which posters were most eye-catching, which were least appealing, and which most clearly communicated the study’s purpose. In the end, the group unanimously selected a few options that stood out. 

“I think youth in general are pretty open to sharing their thoughts and being honest — sometimes brutally honest — about what they’re thinking, which is exactly what we’re looking for,” Mattiucci explained.

Mutual Benefits

The benefits of having a Youth Advisory Board are mutual. For researchers, the HEYA Board offers real-time, practical insights that can be used to improve study design, communication strategies, and overall relevance. For members of the HEYA Board, participation provides exposure to the field of healthcare, scientific research, and offers valuable experience they can add to college applications and future resumes. Equally important, they learn that their perspectives matter.

Looking ahead to year four, Mattiucci is focused on growth and sustainability. In June, the HEYA Board will host its annual picnic at Genesee Valley Park, where researchers who presented over the past year will reconnect with students and report back on how their feedback influenced ongoing projects. Mattiucci also plans to recruit new members as current participants graduate, ensuring that fresh voices continue to shape the work.

“It’s such a great opportunity for their voices to be heard, to actually shape the way we improve healthcare,” he said. “And it’s a lot more fun to be in community with young people and laugh and have fun than to just sit behind a computer all the time. This is the kind of work that I want to be doing as a researcher.”

To learn more about the Health Equity Youth Advisors (HEYA) Youth Advisory Board for Research, please contact HEYA@urmc.rochester.edu.