Background: Health disparities among African Americans and other historically marginalized populations exist from birth well into adulthood. These inequities are worse for African Americans with intellectual or developmental disabilities (IDD), who often have limited access to health care and are often misdiagnosed or diagnosed later than their White peers. African Americans with IDD have been underrepresented in research, thus treatments have not been fully tested in this population.  

Proposed Solution to the Problem: There is a need to engage more diverse populations in research to ensure the benefits of research are experienced by all patients with IDD.

Objectives: The primary objective for this project is to develop a comprehensive patient-centered outcomes research/comparative clinical effectiveness research (PCOR/ CER) agenda to address health disparities and improve the physical, mental and social well-being of Black youth with IDD. To achieve this, the project team will: 

• Develop a formalized group of patients, parents, caregivers, community stakeholders, researchers and health care providers (Community Collaborative, or CC)
• Provide training to CC members in PCOR/CER and participatory research methods
• Conduct community listening sessions with patients, caregivers and community leaders impacted by IDD to identify shared priorities and barriers to PCOR/CER for Black and other racial/ethnic minority youth with IDD in the Kansas City region

Activities: To accomplish these objectives, the project team will formalize relationships between Children’s Mercy Research Institute, the University of Missouri-Kansas-City Institute for Human Development and Transition Academy to create a CC. The CC will meet monthly to plan community listening sessions, receive training in PCOR/CER and participatory research methods, conduct an environmental scan, and develop a collaborative PCOR/CER agenda to improve health outcomes in African-American youth and other marginalized groups with IDD. The CC will develop questions to plan and host four community listening sessions with patients with IDD and caregivers to learn about their experiences living with, or providing support services for African-American youth with IDD. The community listening sessions will include discussions of the facilitators and barriers to health care access and quality health outcomes for youth with IDD. The information gleaned from the listening sessions will be used to create and finalize a list of research priorities and CER questions to address health inequities among marginalized groups with IDD.

Projected Outcomes and Outputs: 

Short-term outcomes during the project period include: Develop and formalize a community collaborative composed of patients and self-advocates with IDD, caregivers and community leaders who are trained in PCOR/CER. Develop a structured discussion guide for community listening sessions and a comprehensive research agenda highlighting priority CER questions elicited from the IDD community. 

Medium-term outcomes (zero to two years post project period) include: Disseminate shared research priorities to researchers and stakeholder groups to strengthen the CC’s capacity to apply for extramural funding to conduct PCOR/ CER projects.

Long-term outcomes (three and more years post project period) include: Conduct an annual conference to highlight health disparities and current research opportunities for patients, advocates, caregivers and community members impacted by IDD.

Patient and Stakeholder Engagement Plan: Patients/stakeholders have been engaged in developing the work plan and budget for this project and will continue to be engaged in planning and facilitating community listening sessions and environmental scans and finalizing a PCOR/CER agenda to reduce disparities in African Americans with IDD.

Project Collaborators: Project collaborators include Children’s Mercy Research Institute, University of Missouri-Kansas-City Institute for Human Development, Transition Academy and patient/community stakeholders.