The Pediatric Congenital Heart Association will host its second in a series of Summits to develop lasting policy solutions that will improve patient-family access to information and improve overall quality of care.
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 shared decision-making and improved outcomes in both patient health and family experience.
As a first step toward achieving this, PCHA convened a Summit in August 2015, at the Ann and Lurie Children’s Hospital in Chicago. A multi-disciplinary group of national experts on congenital heart disease data and reporting worked collaboratively to achieve consensus on the important issues of public reporting.
Once again, the growing number of stakeholders representing surgeons, practitioners, professional societies, payers, federal agencies and policy makers, led by parents and patients, will meet at the 2nd Summit on Transparency and Public Reporting, February 16 and 17, 2016 at Johns Hopkins All Children’s Heart Institute, St. Petersburg, FL. The conversation, building from the first meeting, will focus on mechanisms to achieve increased participation in reporting to national databases and increased public reporting.
Ongoing media coverage of hospitals and families impacted by a lack of transparency from thought leaders like CNN, Healthline and, most recently, the Philadelphia Inquirer, provide an inspirational backdrop for the meeting.
PCHA would also like to acknowledge Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, Dr. Nicolas Madsen, vice-chair of the PCHA MAB, and Dr. Jeff Jacobs, PCHA MAB member, for their incredible efforts in the coordination of this event.
Together, we will improve access to information and improve outcomes. Together, we will Conquer CHD!