The Pediatric Congenital Heart Association was thrilled to have the opportunity to host the recent Summit on Transparency and Public Reporting. Although, it is hard to capture the importance of this meeting on paper, below is a release summarizing the event. We are certain that you will continue to see the impact of this in weeks and months to come.
Hearing that there is something wrong with your baby’s heart is devastating. In the face of this news, parents simply want what is best for their child. This was the case for Amy and Brian Basken, the parents of Nicholas. Nicholas was born with a heart defect that required surgery when he was just 3 days old. “I felt out of control,” recalls Basken. “Looking back, I was asking questions that didn’t matter, when I should have been asking how well they were able to take care of my child.”
Basken is now co-founder and Director of Programs at the Pediatric Congenital Heart Association (PCHA). Their mission is to “Conquer Congenital Heart Disease.” PCHA believes that helping patient and family empowerment is essential to achieving this mission. “I want to help others get the vital information they need so they don’t have to feel the way I did.”
PCHA supports informed decision-making that will allow patients and families to obtain the best medical care possible. Health information that is patient-centered, accurate, accessible, and effectively communicated is a necessary component of patient and family empowerment, resulting in informed decision-making and improved outcomes in both patient health and family experience.
As the first step toward finding a lasting policy solution, the Pediatric Congenital Heart Association was honored to host the Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes at the Ann and Robert H. Lurie Children’s Hospital, Chicago, Il on August 19-20, 2015. National experts on congenital heart disease data and reporting met to discuss the history of public reporting, data collection methodology and reporting strategies. This multi-disciplinary group represented surgeons, practitioners, professional societies, payers, federal agencies, policy makers, parents and patients working collaboratively to achieve consensus on the important issue of public reporting.
Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, and co-coordinator of the event noted “this is the first-of-its-kind meeting in the field where parents are driving the policy conversation in collaboration with the experts – resulting in groundbreaking solutions that will shape the future of pediatric cardiovascular disease care.”
The work of the Summit helped to define areas of consensus and opportunities, which will be outlined in a future publication. Basken notes: “PCHA is already working on next steps – talking to policy makers, considering our options. We have momentum to make lasting change, to improve parent access to information and improve overall quality of care.”