Background: ASD can lead to significant social and behavioral challenges for affected individuals. With appropriate care coordination and early intervention, services can improve developmental outcomes. However, the number of children accessing early screening, comprehensive evaluation, and early intervention services during the critical early years remains low, especially for children from low-income families and minorities. Clinicians are often unaware of options and approaches to care coordination. It is important to identify gaps in knowledge with patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) to improve outcomes for families.
Proposed Solution: ICC will convene a national group of stakeholders including low-income and/or minority families of children with ASD/IDD and the community advocates for these populations. ICC will provide training and support to stakeholders on how to work together as equal partners to build capacity and fill knowledge gaps to support future PCOR/CER addressing options for care coordination.
Objectives: Aims: Training: Patient partners and stakeholders will be trained to work as equal partners in research, with a focus on co-learning. Knowledge: (a) existing models of care coordination across the country will be identified; (b) potential risks and benefits of existing care coordination models will be identified; (c) the outcomes related to care coordination that are most important to families will be identified; and (d) patient partners and other stakeholders will identify potential PCOR/CER questions to inform decisions concerning care coordination.
- Recruit 8-12 patient partners, 8-12 providers, two payers, and three community leaders
- Develop a governance document
- Adapt and hold three webinars on Engaging Patient Partners in the Research Process
- Hold a summit annually to (a) foster co-learning; (b) identify gaps in knowledge; (c) define outcome variables that reflect patient priorities; (d) generate community research ideas to compare outcome variables; and (e) identify additional stakeholders for participation so that the ICC Stakeholder Network will be prepared to develop high-impact PCOR/CER aimed at determining which approaches to care coordination work best for which families.
Projected Outcomes and Outputs: A diverse group of stakeholders will be prepared to participate in PCOR/CER focused on care coordination for ASD that is likely to reduce health disparities in ASD diagnosis and treatment. By understanding the risks and benefits of existing models of care coordination for ASD and the related outcomes that are most important to patients, gaps in knowledge that act as a barrier in making treatment decisions for family partners and providers will be identified. Identifying these gaps is a critical step for future development of high-impact, relevant PCOR/CER questions.
Patient Stakeholder Engagement Plan: Patient partners will have a voice in and will be engaged in planning this project and in conducting and disseminating the work. Patient partners will participate in and help develop webinars and presentations, co-author manuscripts for publication, speak at public forums, and identify appropriate media outlets to best reach patients and stakeholders.
Project Collaborators: Project Lead Krista Clancy, PhD: a licensed psychologist and behavior analyst with 25 years of experience in ABA and ASD. Research Consultant Mat Edick, PhD: an organizational PCORI Ambassador for MPHI and provided technical assistance to PCORI Pipeline to Proposal awardees from the Midwest Pipeline Award Program Office (PAPO). Lead Family Partner Jane Pilditch: the parent of an adult son with an IDD with more than 25 years of experience educating and engaging parents. Senior Project Coordinator Danielle Baumgartner: coordinator with a decade of experience managing projects working to promote systems-level change and improve health outcomes.