Custom-built national database will let members of Pediatric Cardiac Critical Care Consortium provide better customized care to critically ill kids with congenital heart disease.
A group of highly specialized healthcare providers has engaged an analytics firm and a systems integrator to build a national patient registry in hopes of speeding the development and adoption of best practices for treating critically ill patients with pediatric and congenital heart ailments.
The Pediatric Cardiac Critical Care Consortium (PC4) will tap the expertise of ArborMetrix, an Ann Arbor, Mich.-based vendor of analytics technology for acute and specialty care, which runs an international cardiology clinical outcomes database, to custom build the new national registry.
PC4 was formed in 2009 with the help of a National Institutes of Health (NIH) grant, and includes experts in pediatric cardiac critical care, cardiac surgery, and cardiology from across the U.S. and Canada. PC4 aims to improve the quality of care by collecting data on clinical practice and outcomes, providing clinicians with timely performance feedback, and fostering a culture of continuous improvement through analytics and collaborative learning.
The Boston Consulting Group reported earlier this year that disease-specific registries are an essential part of any value-based healthcare system.
The PC4 registry will focus on capturing data from each patient’s medical record, then applying analytics to make patient-specific recommendations for treatment, said PC4 executive director Dr. Michael Gaeis, a pediatric cardiac intensivist at the University of Michigan’s C.S. Mott Children’s Hospital Congenital Heart Center.
“Data serves as the foundation of providing high-quality care to any population,” Gaeis told InformationWeek Healthcare. “But data by itself is not enough.” Many registries are good at collecting data, according to Gaeis, but there often is no “actionable arm.” PC4 wants its registry to offer actionable ideas.
“Registries don’t matter if you can’t take the data and help patients,” Gaeis said.
ArborMetrix will provide real-time access to information in the CardioAccess database and help identify high-performing pediatric critical care cardiology centers. “We [will be able to] disseminate information widely and provide targeted improvement to lower-performing organizations,” Gaeis said. He said the registry also will help PC4 member institutions set up collaborative learning opportunities. “The research component is a real critical piece of it,” he said.
PC4 is modeling its registry after those of the Northern New England Cardiovascular Study Group and several registries ArborMetrix has worked on in its home state, including the Michigan Surgical Quality Collaborative and the Michigan Bariatric Surgeons Collaborative. “I think it’s a pretty tried-and-true blueprint,” said Gaeis.
The University of Michigan is hosting the data coordinating center, supported by the university and residual NIH funding, according to Gaeis, and PC4 will be looking for ongoing funding.
The system is in alpha testing and should move into beta in January. Gaies said the consortium hopes to have 10 centers operational by the second quarter of 2013, “then rapidly expand.” This early group includes Children’s Hospital of Atlanta, Children’s Hospital of Philadelphia, the Hospital for Sick Children in Toronto, the University of California-San Francisco Benioff Children’s Hospital, and the recently renamed Lurie Children’s Hospital of Chicago. The registry will be offered to all PC4 members, although each site will have to sign its own contracts with the vendors, according to Gaeis.