Background: Nearly 20% of all children in the US have a special health care need (e.g., asthma, ADD, disability) requiring additional, tailored health care services and support. These children and youth with special health care needs (CYSHCN) receive services and supports from a multitude of systems: Medicaid, state Maternal & Children Health (MCH)/Title V/CYSHCN Programs, primary and specialty care, and mental health, among others. Effective coordination of care and health services across these systems is key to ensuring the unique needs of CYSHCN and their families are met. Policy-relevant patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) is the foundation with which advanced care coordination practice is built. To increase the reach of evidence and facilitate its use, Project ACCELERATE (Advancing Care Coordination through Evidence; Leveraging Existing Relationships Around Transforming PracticE) will bring together Medicaid Medical Directors, MCH/Title V Directors, and patient advocates into state teams to distill the latest Patient-Centered Outcomes Research Institute (PCORI)-funded evidence related to enhanced care coordination for CYSHCN and identify strategies best suited for their state-specific landscapes for dissemination.
Proposed Solution to the Problem: Medicaid agencies play a significant role in providing coverage for CYSHCN, engaging collaboratively with MCH/Title V Programs to improve and integrate systems of care for CYSHCN, and leveraging resources that serve CYSHCN and their families. The Medicaid Medical Directors Network (MMDN), with numerous pediatric and family medicine practitioner members and significant expertise in the translation of PCOR/CER findings, is well positioned to work with MCH/Title V colleagues and family advocates to increase care coordination for CYSHCN and foster greater application of PCOR/CER evidence into healthcare policy and practice.
Objectives: Project ACCELERATE’s objective to harvest and foster PCOR/CER applications will be guided by the following aims:
1) Enhance dissemination mechanisms between MMDs and MCH/Title V Directors to advance the use of PCOR/CER evidence in policy decision-making and care delivery;
2) Establish an Advisory Committee to include additional CYSHCN experts to extend the learnings; and
3) Expand the reach of the key stakeholder partnerships through existing channels, (i.e., the National Care Coordination Academy (NCCA) and Family Voices).
The project will engage these influential CYSHCN stakeholders as state partners in a series of listening sessions and two annual in-person meetings. Representatives from these stakeholder groups will comprise an Advisory Committee to develop the final workplan, plan project convenings, and identify additional relevant PCOR/CER studies (completed and ongoing) for discussion. Having families and youth involved from the onset will assure implementation planning is patient-centered at the systems level.
Activities: The project will engage these influential CYSHCN stakeholders as state partners in a Kick-off Meeting and Summary Meeting, along with a series of listening sessions in between. Formatted as a workshop, the Kick-off Meeting (month 6) will invite state teams (i.e., Medicaid, MCH/Title V, and family advocacy partners) to travel together to assess and plan for PCORI study dissemination and implementation in their states. State teams and invited researchers will review findings from pre-selected PCORI studies to discuss dissemination and implementation strategies for CYSHCN care models and prioritize mechanisms to promote effective system enhancements. The project team will also convene affinity groups (i.e., medical directors, policymakers, family advocates) to address common opportunities and challenges for active dissemination in their specific policy landscape. Project participants will have two years to work collaboratively to refine their state efforts over the project term. Generating a “CYSHCN Playbook for Dissemination & Collaboration” at the Kick-off Meeting, state teams will then have 12 months to actualize further dissemination efforts before reconvening in person again (month 18) to share best practices and strategies for continued collaboration and sustainability. The Project ACCELERATE Advisory Committee will inform the agenda.
Projected Outcomes and Outputs: In the short term, Project ACCELERATE will elevate PCORI-funded research to MMDs, MCH/Title V Directors, and families to facilitate this information use in their decision-making. States will have the opportunity to receive and review specific PCORI-funded evidence that support the implementation of family-centered care for CYSHCN. Medium- to long-term outcomes (post-project period) may yield advanced implementation of PCORI evidence to accelerate delivery system transformations that further improve care coordination and ultimately impact health outcomes for CYSHCN. Working collaboratively with the NCCA and Family Voices, the project team will ensure meaningful stakeholder engagement from start to finish.
Patient and Stakeholder Engagement Plan: This project will convene the MMDs, MCH/Title V Directors, and family advocates to collaborate on improved application of PCOR evidence, especially as it relates to care coordination for CYSHCN. CYSHCN are a diverse group of children. They are an integral part of their families, and together, they are the stakeholders for the dissemination of this research. In contrast to other patient stakeholder groups, this group is made of families, children, and youth. Family advocates from Family Voices represent and almost always have lived experience as families of or patients with special health care needs. While advocacy groups exist for specific diagnoses, Family Voices is the leading national and state group advocating for comprehensive care, care coordination in health care, and care integration across systems for all CYSHCN. Additionally, Family Voices administers the federally funded Family to Family Health Information Centers, whose mission is to provide critical support to families caring for CYSHCN, particularly families of children with complex needs and those from diverse communities. There is a Center in every state.
Project Collaborators: The National Care Coordination Academy (NCCA) and Family Voices.