4:30 - 6:00 pmSaturday, September 17
LK 209
Workshop: A Parent and Pediatrician Discuss How Parents and Clinicians Co-Created Improved Outcomes for Children with Complex Heart Disease.
LK 209
Workshop: A Parent and Pediatrician Discuss How Parents and Clinicians Co-Created Improved Outcomes for Children with Complex Heart Disease.
Cincinnati Children's Hospital Medical Center
Cincinnati Children's Hospital Medical Center
In this session, a parent and a pediatrician partner will discuss the powerful impact of the collaboration between the 55-center multi-institutional National Pediatric Cardiology Quality Improvement Collaborative... Read more

Description

In this session, a parent and a pediatrician partner will discuss the powerful impact of the collaboration between the 55-center multi-institutional National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC), and Sisters by Heart (SBH), a mother-led parent support and advocacy group. Clinicians and parents set about to change the way care is delivered for infants born with “half a heart”(HLHS). As a result of this collaboration, care processes and outcomes have significantly improved, including a 45 percent reduction in mortality across care centers. We estimate that this represents 31 lives saved since the summer of 2013 (or the equivalent of a classroom of kindergarteners). When clinicians partner with parents in a real way, empathy is built and change happens.

NPCQIC was created in 2007 to improve care and outcomes for infants born with “half a heart” (HLHS). Key network objectives were partnering with parents, eliminating growth failure, and reducing mortality. Multidisciplinary teams include cardiologists, nurses, dieticians, and others who submit data to a population registry. Data is collected on clinical care processes and health outcomes, and shared in monthly webinars and semi-annual face-to-face learning sessions. SBH is a group of ‘heart moms’ who met online in 2010 following their infants’ second of three open-heart surgeries, and launched a non-profit organization to reach out to and support families of infants with HLHS. SBH has developed a growing Linked by Heart (LBH) database of families of children with HLHS, and a national system of regional coordinators and parent outreach. NPCQIC and SBH began collaborating in 2012. Parents are now key partners with NPCQIC, serving in network leadership roles, co-producing the care and research workgroups, driving the data transparency agenda, co-creating tools, and leading learning sessions and monthly calls. This has led NPCQIC/SBH to take on an expanded set of goals involving surgeons and intensivists and beginning at the child’s diagnosis, often during fetal life, and continuing to the first year of life. This second phase will have an important focus on improving support for families.

NPCQIC/SBH is one of five learning networks (LN) supported by Cincinnati Children’s Hospital Medical Center. Others focus on chronic disease, perinatal care, and safety; all have improved outcomes. LN involve patients, families, clinicians and researchers and use data for both improvement and research. LN enable improvement, innovation, and discovery.

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