The critical role of parents within a Learning Health Network

Area of Science:

• Pediatric Rheumatology
• Health Services Research
• Patient Engagement

Background:

• Parent members are integral to the Pediatric Rheumatology Care & Outcomes Improvement Network.
• Parents participate in Quality Improvement (QI) projects, committees, and governance.

Purpose of the Study:

• To discuss the critical role of integrating parents as partners in a pediatric Learning Health Network.
• To highlight the impact of parent partnership on care quality and outcomes for children with chronic illnesses.

Main Methods:

• Involvement of parent members in QI projects and governance.
• Development of QI measures and initiatives by the Parent Working Group (PWG).
• Creation of self-management support toolkits for families and patients.

Main Results:

• Parents actively contribute to QI measure development and clinical initiatives like Treat-to-Target.
• The Parent Working Group (PWG) develops essential self-management resources.
• Parent partnership is fundamental to the network's operations and success.

Conclusions:

• Integrating parents as partners is critical for improving the quality of care for children with chronic conditions.
• Parent involvement significantly enhances health outcomes within pediatric healthcare networks.
• The model demonstrates the value of patient and family engagement in healthcare improvement.