Tremendous progress has been made in the science of assessing the outcomes of the treatments of patients with pediatric and congenital cardiac disease. Multi-institutional databases have been developed that span subspecialty, geographic, and temporal boundaries. Linking of different databases enables additional analyses not possible using the individual data sets alone and can facilitate quality improvement initiatives. Measures of quality can be developed, in the domains of structure, process, and outcome, which can facilitate quality improvement. Parents are an integral part of the health care team and are key partners with regard to quality improvement. The role of the parent in the process of health care delivery can be facilitated by enhancing the organizational culture and creating methods of transparency, empowering parents, and implementing effective strategies of communication. The professionals caring for patients with pediatric and congenital cardiac disease, in collaboration with the patients and their families, now have the opportunity to capitalize on the power of our databases and move beyond outcome assessment and benchmarking, to collaborative quality improvement.
Keywords: congenital heart disease; congenital heart surgery; database; outcomes; quality assessment; quality improvement; quality of life.