Children with complex health needs (CCHN) are a unique pediatric patient population. They have chronic medical and/or behavioral conditions that need ongoing health care. They use a disproportionate share of hospital resources. And they face greater social challenges when compared to other children. In North Carolina (where we work) and across the country, CCHN fail to receive coordinated services, which leads to both unmet health needs and poorer outcomes.
To address this, we formed the Children’s Complex Care Coalition of North Carolina and held a series of virtual convenings with community partners to figure out where we could start. We learned a few important lessons about how to empower patients and families, strengthen the provider workforce, and increase collaboration. We’ll share those lessons here and hope others may find this helpful in their own communities.
The Challenges of Delivering Care to Children With Complex Health Needs
CCHN need a range of services from many sectors to support their health and well-being. This often complicates how doctors and others work meet their health needs. The Complex Care Ecosystem model (Figure 1 below), developed by the National Center for Complex Health and Social Needs, shows these many sectors. It highlights the importance of services beyond clinical care (e.g., transportation, housing, home care, etc). More about this topic can be found in the Blueprint for Complex Care [pdf].
Problems within the sectors (e.g., resourcing, long waitlists) and between sectors (e.g., limited knowledge of available services, lack of data sharing and coordination) can result in confusion for families and lower quality care. Racism and marginalization experienced by families of color, non-English speakers, and rural communities also amplify the challenges in accessing care and improving health outcomes. And without the right payment mechanisms to encourage collaboration across sectors, fixing these problems can be difficult.
A Virtual Convening to Improve Complex Care in North Carolina
The Children’s Complex Care Coalition of North Carolina (known as Path-4CNC) held a virtual convening series to improve systems of care for CCHN in North Carolina. The convenings were held in January-March, 2021. We invited 90 partners representing state and local agencies, health professionals, community organizations, and families of CCHN from across the state.
Each 2 ½ hour virtual convening consisted of several parts designed to problem solve. At each convening we started with a keynote presentation. Then we held a brief didactic session focused on practical topics relevant to families of CCHN. Finally, we held a small group exercise to foster discussion and elevate recommendations. More about the structure of the convenings can be found in our second blog post.
As a result, we identified challenges and strengths in the current systems of complex care. Then we developed recommendations to improve these systems and better address the needs and priorities of CCHN, their families, and care providers.
The Main Challenges Our Partners Identified in North Carolina
- Inefficient and cumbersome processes to obtain funding approval for services.
- Workforce shortages across the complex care system.
- Difficulty maintaining connections between families and providers.
- Very limited collaboration and integration across sectors.
Figure 2: Major Themes and Core Challenges Identified by Convening Participants
Four Actionable Cross-Sector Steps to Improve Systems of Care
Our community partners and convening participants identified four main cross-sector opportunities to improve care for CCHN (also see Figure 3). The series of Path-4CNC convenings highlighted the importance of addressing workforce capacity concerns, incentivizing cross-sector collaboration, strengthening technology and data-sharing platforms, and engaging and empowering family partners. Improvements in this ecosystem of care will also benefit the care of child populations with similar health challenges, including children and families with high social needs.
Figure 3: Actionable Steps Recommended by Convening Participants
Leveraging the momentum from the convenings is essential to equitably advancing health for CCHN in NC. The results from our work may also help improve systems of care for CCHN across the country. Our findings are relevant to other providers, clinics, hospital systems, community organizations, and government agencies working to improve health and social outcomes for this patient population and their families. You can read more in our coalition’s white paper on children with complex health needs.
In our next blog post, we’ll share a toolkit and strategies for others interested in virtual coalition-building.
Sophie Hurewitz
Latest posts by Sophie Hurewitz (see all)
Latest posts by David Ming (see all)
Neal deJong