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Julie Moretz stood at the front of the Shapiro Boardroom, narrating her own patient- and family-centered version of the Dr. Seuss classic, Oh, The Places You'll Go!, to the Partners Patient Family Advisory Council members gathered around the room.
Moretz, director of Special Projects at the Institute for Patient- and Family-Centered Care (IPFCC), was invited to present to council members as part of a patient- and family-centered care symposium held late last year. Moretz works with hospitals and health systems across the country to integrate this model of collaborative care in order to enhance quality and patient safety.
"Storytelling is so important to your role here," said Moretz, who was inspired by her youngest son's long-term battle with heart disease to become an advocate for patient- and family-centered care. "There is no greater burden than carrying an untold story. When you tell your story, you give power and life to others. Facts bring us to knowledge, but stories bring us to wisdom."
Leading the charge to strengthen the involvement of patients and families at BWH is the Center for Patients and Families. There are now 14 departments and centers where patients and family members are working side-by-side with staff in various ways, including through advisory councils. This past year, departments and divisions also began inviting patients and family members to present their perspective at Grand Rounds meetings.
"In order for health systems and hospitals to truly improve people's health, the patient must become part of the system; not merely have input into the system," said Moretz, who is a past recipient of the Woman of Excellence in Health Care Award and the American Heart Association Lifetime Achievement Award. "When you involve patients and families and give them a voice, you change outcomes."
BWH's Gayle Schumacher, a part-time family support specialist in the NICU, is one such voice for patients and families. Before becoming employed by BWH in the first position of its kind, Schumacher spent weeks in the NICU with her son, Weston, who is now a healthy 11-year-old. Schumacher describes that time in her life as one of the most challenging, intense and stressful periods. Now, in her current role, she works to reduce the stress and fear parents and families of NICU patients feel, and open up communication between care providers and families, serving as a go-between. She knows what patients and families need because she's been there.
"Just sharing with parents that I remember feeling the way they feel can make a world of difference," said Schumacher.
That difference extends past their time at BWH. "If parents can leave here feeling more whole, they will do better in their post-NICU life with that baby," Schumacher added.
Learn more about Gayle Schumacher and her family's story in this video by BWH Development.