In 2017, five founding organizations, along with a multi-disciplinary group of stakeholders (representing patients & families, heart center leadership, NHLBI, professional societies, CHD foundations, QI/research experts) came together to collaborate to address these challenges.
Vision: To accelerate improvements in health outcomes for patients with pediatric and congenital heart disease by uniting and aligning networks, organizations, and stakeholders across the field to advance research and improvement efforts through collaboration
Reach: Represent >65 cardiac programs across North America, span multiple phases of care:
PC4 (cardiac ICU) PAC3 (pediatric cardiology inpatient ward)
ACTION (heart failure) NPC-QIC (single ventricle patients)
CNOC (neurodevelopmental outcomes)
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PC⁴ is a multi-institutional collaboration committed to investigation through transparent sharing of data.
Cross Boundary Partnerships
We will partner with professional organizations across geographic and subspecialty boundaries to integrate existing databases and harmonize our common efforts.
We seek to advance pediatric cardiac intensive care medicine through critical evaluation of data, identification of evidence-based practices, and public dissemination of this information
PC⁴ will be an international leader in the effort to improve care to critically ill patients with pediatric and congenital heart disease. The Data Coordinating and Analytic Center (DCC) for PC⁴ is housed within the Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program at The University of Michigan C.S. Mott Children’s Hospital.
The DCC is responsible for communicating with participating sites, coordinating the efforts of our partnering vendors providing data collection capabilities and data feedback to the sites, developing and implementing risk adjustment models for benchmarking, and analyzing comprehensive registry and research data collected within PC⁴. These data will be used to examine variation in outcomes and practice patterns, generate new knowledge linking processes of care to outcomes, and identify best practices and opportunities for quality and efficiency improvement.
The DCC will support participants in establishing quality improvement goals, conducting rigorous science, and in implementing evidenced-based practices. DCC personnel include a dedicated project coordinator, data manager, biostatistician, and quality improvement expert. Dr. Sara Pasquali is the Director of the Data Coordinating Center for PC⁴ and oversees the DCC functions.
PC⁴ will provide participating hospitals with:
- 24/7 access to real-time, reliable, and actionable data to be used for local quality improvement
- Risk- and reliability-adjusted comparative analyses on quality metrics selected by the consortium
- Innovative and sophisticated informatics platforms that integrate with other registry projects in pediatric cardiac care
- An infrastructure to identify and disseminate evidenced-based practices that improve clinical and resource utilization outcomes
- High return on investment