Describe your involvement with the MGHfC Family Advisory Council

I’ve been involved with a few initiatives as a part of the Family Advisory Council. One has been a sub-committee that is centered on improving the inpatient experience. We focus on understanding and responding to families’ needs when they have a child who is inpatient, especially when they’re at the hospital for an extended period of time.

A lot of our efforts have been focused on data collection and gathering information from patient experience surveys that families have completed after they go home. The goal has been to help patients and their families navigate the hospital experience with more ease. Some of our efforts might seem small, but they mean so much in the context of a hospital stay. Things like the face sheets in the hospital room that tell you who the doctors and nurses help families a great deal. A hospital can be a busy and stressful place, so it helps to know who is caring for your child, who is on the floor and when the physicians might change.

Another effort I’ve been a part of has been connected to changes to family-centered rounds. In family-centered rounding, patients and families participate in ways that they may not have been in the past, and are considered important members of the care team. They take a more active role in their care and have a voice. It’s been fascinating to be a part of the conversation around that.

 

What inspired you to join the FAC?

My daughter, Sophie, was diagnosed with Alagille syndrome, which affects her liver. She has been a patient at MGHfC since birth and in 2016 she had a liver transplant. In going through that experience with Sophie and in joining the FAC, I hope my experience can help other patients and families in some small measure.

 

What do you like most about MGHfC?

MassGeneral Hospital for Children is the kind of place where patients feel seen and known. I know that has been so true for my daughter and other families and patients as well. I am convinced that it was an important part of the care that she received here, and I am very grateful to MGHfC for that.

Learn more about the Family Advisory Council at MGHfC.