Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

• Published in: Cardiology in the young Vol. 29; no. 2; pp. 111 - 118
• Main Authors: Gaies, Michael, Anderson, Jeffrey, Kipps, Alaina, Lorts, Angela, Madsen, Nicolas, Marino, Bradley, Costello, John M., Brown, David, Jacobs, Jeffrey P., Kasnic, David, Lihn, Stacey, Lannon, Carole, Margolis, Peter, Pearson, Gail D., Kaltman, Jonathan, Charpie, John R., Redington, Andrew N., Pasquali, Sara K.
• Format: Journal Article
• Language: English
• Published: Cambridge, UK Cambridge University Press 01.02.2019
• Subjects: Big Data; Cardiology; Clinical outcomes; Collaboration; Congenital diseases; Data Collection - methods; Data integration; Datasets; Heart; Heart Defects, Congenital; Heart surgery; Hospitals; Humans; Information Services; Infrastructure; Interinstitutional Relations; Interprofessional Relations; Knowledge management; Networks; Original Article; Parents; Patients; Pediatrics; Program Development; Quality control; Quality Improvement; Registries; Working groups; collaborative quality improvement; other; paediatric cardiology; Clinical registries; quality improvement
• ISSN: 1047-9511; 1467-1107; 1467-1107
• DOI: 10.1017/S1047951118001683

Optimising short- and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network – Cardiac Networks United – that seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groups – heart centre executives, research leaders, learning health system experts, and parent advocates – offer their perspectives on the need for this new collaborative effort.