Breaking Down Barriers in the Fight Against Congenital Heart Disease
Academic research has long been characterized by silos and protective instincts. A new crop of fresh-thinking physician scientists are turning that model on its head, and the results are saving little hearts.
More than 1 in every 110 babies is born with some form of congenital heart disease. CHDs are the most common birth defect, in fact. Clinicians have made great strides in improving care for these children, and even individuals with severe diseases may now live well into adulthood. However, not all survive and many still experience significant complications.
“As a doctor in a pediatric cardiac ICU, we know there are things we want to do better,” says Michael Gaies, M.D., a cardiac intensivist and director of quality at the Congenital Heart Center at Michigan Medicine’s C.S. Mott Children’s Hospital.
“We believe we can improve care for kids recovering from heart surgery if we can better control certain parts of the post-operative journey.”
The problem? Data, or rather, lack of it.
“We’re a large, experienced heart center with patients travelling here from around the globe, but we knew we weren’t going to find the answers by ourselves,” says Gaies.
Strength in numbers
By scientific standards, even the highest volume heart centers may not see enough patients with certain types of heart defects to allow in depth study of treatments and outcomes.
Several initiatives had begun to collect information across hospitals for research studies and other purposes, but participating hospitals often only had access to their own data, at best, and opportunities to share information across hospitals and learn from one another were limited. In addition, many efforts focused only on one aspect of care and short-term outcomes, making it difficult to evaluate the broader impact on patients and families, including long term survival, quality of life and need for subsequent care across the continuum of CHD management.
Fortunately, Gaies and his colleagues at U-M weren’t alone in dreaming of something better.
In 2009, they created the Pediatric Cardiac Critical Care Consortium (PC4), entering what has become a new era in congenital heart research.
“PC4’s work is focused on improving the quality of pediatric cardiac critical care – for example, the care a child might receive immediately after a complex heart operation,” notes Kurt Schumacher, M.D., a U-M pediatric cardiologist and director of the PC4 Data Coordinating Center.
Hospitals participating in PC4 commit to sharing data freely, enabling any participating center the ability to better understand care practices and outcomes across the member institutions, and to learn from one another.
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