Volunteer Leaders Improve the Patient Experience

Some experts in pediatric care do not wear white coats, stethoscopes or scrubs. They are former patients and their families who call Children’s National their second home.

Our Patient and Family Advisory Council, established in 2007, elevates the voices of those who have navigated complex health conditions to create positive systemic change at Children’s National. The council reports to the hospital’s Patient and Family Experience team. That team reports to Linda Talley, MS, RN, NE-BC, FAAN, senior vice president and chief nursing officer, and presents annually to the Children’s National Board of Directors.

Darcel Jackson joined the council 12 years ago as a volunteer. She simultaneously began a professional role at the hospital as a parent navigator to support families with complex care needs. Years of specialty care, surgeries and emergency visits with her late daughter, Anniyah, inspired her. “I realized early on that I would advocate for her and other families like ours,” Jackson says.

Over the years, additional Patient and Family Advisory Councils have formed. One centers on the Neonatal Intensive Care Unit. Another is the Youth Leadership Council. Jackson, now the manager of Patient and Family Centered Care, harnesses input from the councils and patient families to improve the care journey for all. “The councils engage us not just as volunteers but as hospital partners to make the experience better for everyone,” she says.

Jackson’s team places council members as key stakeholders on hospital projects, from redesigning the check-in process to the parking garage. Some joined the Vertical Transportation Committee to consult on installation of our new entrance. This resulted in higher ceiling heights for wheelchair-accessible vans and enhanced bathrooms on the ground level. “Every element aims to marry the needs of our staff and our families,” she says.

Council members meet with current patient families during doctors’ rounds. Austin Lee, a kindergarten teacher, was born with kidney disease and faced years of surgeries, two dialysis procedures and two kidney transplants at Children’s National. His mother donated her kidney for his first transplant. The second came through a paired living donor kidney exchange program. After receiving the second kidney, Lee promised himself he would do everything he could to give back to others in the community.

“I joined the council to share my story with other pediatric patients and put their perspective at the forefront,” Lee says. “I dreamt of the freedom I have now from my kidney transplants and want others with similar experiences to be able to do the same.”

Lee has volunteered hundreds of hours, visiting nephrology patients, sharing resources, setting up holiday decorations in the dialysis clinic and raising funds for gifts, among other activities. He also is a member of our Child Life Council and studying to become a child life specialist to bring comfort to patients like him. “Years after my transplants, I am blessed with having a family at Children’s National and am still embraced,” Lee says.

“My greatest hope is that every patient and family at Children’s National feels heard and embraced like I was,” says Jackson. “We want to honor their experience.”