In order for patients and families to choose the best medical care, they need the tools and information to make educated decisions. Accurate and accessible data allows patients and families to compare programs, evaluate their benefits and risks, and choose the program that best fits their needs. Industry-wide transparency is necessary for families to make informed decisions – without it, patients may experience unnecessary risk or harm.
Currently, it’s very difficult for a parent to evaluate and compare program performances for various reasons, which include:
Not all organizations report their outcomes to national databases
Organizations that do report their outcomes may do so differently than other organizations, leading to variations in the data
Outcomes data may be difficult to understand or parents may not know what questions to ask
In August 2015, Lurie Children’s sponsored the Pediatric Congenital Heart Association’s Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes. National experts on congenital heart disease data and reporting gathered for the two-day summit with two goals in mind:
To inform, educate and empower patients and families to actively participate in data-driven shared-decision making
To use data sharing and collaborative learning to improve pediatric and congenital cardiovascular outcomes, reduce variation, and increase value at all pediatric and congenital cardiovascular programs
The summit was attended by many leaders in the pediatric cardiovascular community and was deemed a tremendous success. A diverse group of stakeholders, including surgeons, cardiologists, nurses, professional societies and associations, payers, federal agencies, policy makers, parents and patients collaborated to achieve consensus on the important issue of public reporting.
Government: Illinois Senator Durbin’s Office, National Institutes of Health, Centers for Disease Control and Prevention, Agency for Healthcare Research and Quality, and England’s National Institute for Cardiovascular Outcomes Research
Media: CNN and U.S.News & World Report
Industry Organizations: Congenital Heart Surgical Society, American Heart Association, American College of Cardiology, Pediatric Cardiac Critical Care Consortium, Society of Thoracic Surgeons, American Board of Pediatrics, Pediatric Cardiac Intensive Care Society, Children’s Hospital Association, Children’s Heart Foundation, National Pediatric Cardiology – Quality Improvement Collaborative, IMPACT Registry, and The Joint Commission
Consumer Organizations: Pediatric Congenital Heart Association, Mended Little Hearts, and Sisters-by-Heart
Children’s Hospitals: Lurie Children’s, The Children’s Hospital of Philadelphia, Lucile Packard Children’s Hospital, Children’s Hospital of Wisconsin, All Children’s Hospital Johns Hopkins Medicine, Texas Children’s Hospital, Boston Children’s Hospital, C.S. Mott Children’s Hospital, Children’s Healthcare of Atlanta, Cincinnati Children’s Hospital Medical Center, Children’s Hospital of Colorado, Children’s National Medical Center, Hospital for Sick Children, and Children’s Hospital of Los Angeles
Impacting the Future of Healthcare
As a result of the meeting, a working group of attendees is producing a white paper to summarize the key points from the meeting; the white paper will be published in a leading cardiovascular journal. A follow-up meeting will also take place to discuss next steps for furthering the issue and incorporating standards into future legislation. Read more about the summit on the PCHA website.