Pediatric Coordinated Care Clinic/MassGeneral Hospital for Children

The Pediatric Coordinated Care Clinic at MassGeneral Hospital for Children (MGHfC) provides a variety of important services to families of children with complex health care needs. The Clinic began in 2006 and serves infants, children, adolescents, and their families from Massachusetts, Maine, New Hampshire, Rhode Island, New York, and outside the United States.

The Clinic is an inspiring example of how patient and family partners can truly transform care. Sandy Clancy’s son Jack died in September 2004 of a rare fatal disease. During the 8-9 month period of his illness, Jack spent time in the hospital but also at home. Sandy remembers wishing there had been “one person to call, one physician who was the leader—one quarterback of the team.” Essentially, Sandy coordinated her son’s care and served as the liaison between different specialists. “I sometimes felt that I held all the health information about Jack, while the providers each had pieces.” Sandy also spent hours negotiating with medical supply companies, pharmacists, and insurance companies.

After Jack’s death at age 5, Sandy and her husband met with MassGeneral’s Chief of Pediatrics and shared their frustrations about the lack of continuity of care for children with complex medical needs who are outpatients. Sandy talked about the difficulty of being both a mother and a care manager. The Chief of Pediatrics promised Sandy that they would “find a remedy for this problem.” Sandy insisted that she wanted to be part of the remedy—of the change.

With that impetus, MassGeneral not only began developing its Pediatric Coordinated Care Clinic but also hired Sandy to be the Clinic’s first Manager in 2006; she is still in that position. Sandy says that her own experience as the mother of a child with complex needs has “informed and shaped” her insights for designing the Clinic’s services.

Sandy offers the following advice to other patient/family advisors beginning to partner with staff members in primary/ambulatory care, “There is enormous power and possibility for transformation in, straightforwardly, sharing one’s experiences and being open to engaging in dialogue with staff and leadership about solutions. The goal—always—is to change systems of care.”