Children’s Hospital Advisory Council Provides Valuable Voice to Patients and Families

Peter Hyde, of Cohoes, arrived in the world far ahead of schedule and desperately in need of putting on a few pounds.

Born at 26 weeks and weighing only 1 pound, 1 oz., Peter, now 2, spent 111 days in the Neonatal Intensive Care Unit. His parents, Panagiota and Alexander, got to know the NICU doctors, nurses, and staff quite intimately during that roller-coaster stretch that involved their ‘micro-preemie’ undergoing multiple surgeries and surviving necrotizing enterocolitis in his bowels.

So when approached about participating in a new, unique initiative seeking insights and feedback from families touched by the Bernard & Millie Duker Children’s Hospital, his mother eagerly jumped at the opportunity to “give back” to the hospital that saved her son’s life.

Launched amid the Covid-19 pandemic and meeting virtually since last March, the Patient and Family Advisory Council (PFAC) recruited parents of former and current patients with a broad range of experiences across the children’s hospital. Advisory council members provide insights for improving programs and services, quality initiatives, policies and even marketing and communication strategies.

The PFAC is led by Anne Martin, risk manager, with assistance from Maryalice Cullen, AVP, Women’s & Children’s Services. Cullen and Barbara Ostrov, MD, chief of service at the children’s hospital, initially proposed the concept to senior leadership. They received the green light to form the council, with the goal for it to serve as the model for an eventual organization-wide advisory council.

The group interviewed nearly 20 families in late 2019 who could provide objective input for improving patient and family satisfaction at the children’s hospital. Each member would serve a two-year term.

“We didn’t necessarily want people to tell us what we wanted to hear or what we thought they should be telling us,” said Martin. “We really wanted people to say, ‘Hey, we had this experience and we think you could do this better.”

The first year has focused on educating members on unique programs and services at the children’s hospital, quality improvement and safety initiatives, and communications strategies, with an emphasis on promoting transparency and communication.

Hyde said she has enjoyed listening to the guest speakers and providing feedback in redesigning the NICU’s educational brochure for families. “I definitely think (PFAC) has been a great opportunity to involve family members and allow us to give back in a way that can hopefully help other families,” said Hyde, who looks forward to participating in a “more integrated approach” once Covid-19 restrictions ease.

For the highly coveted providers, nurses, and staff positions on the advisory council, Cullen said “the value in it is that they hear first-hand from patients with their impressions, which is worth the price of admission. Every single person who has come to PFAC wants to come back.”

Plans call for PFAC members to serve on other standing committees and even function as parent mentors to those whose children recently received similar diagnoses. Based on her consultations with other children’s hospitals, Martin envisions PFAC becoming a “parent-driven council” where members “become more actively involved from a leadership perspective and help drive the agenda.”

“We need their voice,” added Cullen. “We need patients’ voices in order for us to meet our mission in terms of being good community partners. We value them.”