INTEGRATED CARE ROADMAP FOR CHILDREN WITH MEDICAL COMPLEXITIES

CLIENT:

In collaboration with the University at Buffalo and funded by a Lucile Packard Foundation for Children's Health sponsored grant

Context / Challenge: In the realm of pediatric healthcare, there exists a subset of children facing extraordinary challenges - those with medical complexity (CMC). These children grapple with multiple chronic conditions, placing immense strain on families, healthcare systems, and social systems alike. Despite comprising only one percent of the pediatric population, CMC consume over one-quarter of healthcare costs for children and face higher rates of hospitalization. The current care landscape, fragmented and inefficient, fails to meet the unique needs of these children and their families. The challenges facing CMC and their families are multifaceted. Navigating a maze of primary care, subspecialists, education services, and community-based support is daunting. Communication and coordination between these disparate elements are often lacking, leading to gaps in care and increased stress for families. The need for a more integrated and collaborative approach to care coordination is urgent.

Approach: Recognizing the need for change, a dedicated team of innovators embarked on a strategic design journey. Leveraging the four "D's" framework - Discover, Define, Design, and Deliver - they immersed themselves in the world of CMC and their families. Through literature reviews, interviews, and workshops, they gained deep insights into the pain points and complexities of the current system. Armed with this knowledge, they crafted a comprehensive solution centered around human-centered design principles.

The solution focused on fostering collaboration among stakeholders, streamlining communication channels, and bolstering support networks for emotional and social needs. We developed a roadmap and frameworks to guide providers, hospitals, and care systems in implementing an integrated care coordination model tailored to the needs of CMC and their families.

Impact: By addressing the challenges of fragmentation and inefficiency head-on, they transformed the landscape of care for CMC and their families. Common data-sharing platforms, improved communication channels, and enhanced support networks empowered stakeholders to work together seamlessly, resulting in better outcomes for children and reduced stress for families. Our white paper, published in November 2018, serves to further innovation and collaboration in the realm of pediatric healthcare.

Authors:  Dennis Z. Kuo, MD, MHS | Chuck Ruud, MPS | Denise Tahara, MBA, MPhil, PhD 

Special thanks to the working group:  Richard Antonelli, MD, MS | Chris Stille, MD, MPH | Rita Mangione-Smith, MD, MPH | Richard Antonelli, MD, MS | Momba Chia, MHA | Anthony Billitier, MD | Michele Juda, BA | Joseph Stankaitis, MD, MPH