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ASU Awarded PCORI Engagement Award to Advance the Study of Care Coordination for Children with Special Health Care Needs

Arizona State University’s “Take Action for Arizona’s Children Through Care Coordination: A Bridge to Action” project was recently awarded funding by the Washington, DC-based Patient Centered Outcomes Research Institute (PCORI).  The award, which is the first PCORI award for ASU, will allow principal investigator, Elizabeth Reifsnider, Associate Dean for Research at ASU’s College of Nursing & Health Innovation, and her team to build a broad-based coalition to address the care coordination needs of Children with Special Health Care Needs (CSHCN) and their families. 

The children who are the focus of the project have chronic physical, developmental, behavioral, or emotional conditions that require health care and related services beyond what is typically required for children without these conditions. Reifsnider’s project is designed to address the families’ needs for care coordination through creating a statewide (Arizona) system that can be tested through patient centered outcomes research.

The project will be operated though ASU’s new Center for Advancing Interprofessional Practice, Education and Research, with Phoenix Children’s Hospital serving as a major partner.  Other partners include Yuma Regional Medical Center, North Country Healthcare, University of Arizona, Ryan House, the Arizona chapter of the American Academy of Pediatrics, Raising Special Kids, Arizona Medicaid Mercy Care, Arizona Department of Health Services, and the Arizona Department of Economic Security.

While the project’s stakeholders include clinicians, payers, government representatives, and nonprofit agency representatives who are concerned with care coordination for these families, eight parents of CSHCN also participate in the coalition and steering committee meetings.

The project team will build the capacity of their existing CSHCN coalition by conducting research during five regional conferences to take place in Flagstaff, Phoenix, Tucson, and Yuma, Arizona. The funding from PCORI will allow Reifsnider and her team to create an infrastructure that will expand the coalition’s ability to conduct patient centered outcomes research on care coordination to better serve the children and their families.

The coalition will explore how stakeholder partnerships can best develop a research and development plan for the project while building engagement and research skills that focus on redesigning systems that incorporate care coordination and ensure secure, confidential HIPAA compliance. The coalition also plans to explore long-term strategies for system redesign and a research pathway to examine the most effective and efficient mode of care coordination for the children and their families.

Data collected through participatory research methods will allow Reifsnider and her team to build statewide consensus and determine the care coordination needs for the children, their families and their care providers that can ultimately be disseminated statewide and nationally.