Background: Adolescents and young adults (AYAs) with intellectual and/or developmental disabilities (IDD) are at elevated risk of having poor outcomes during the transition to adulthood period. Health disparities among AYAs with IDD are further amplified for individuals from underrepresented racial and ethnic groups and those residing in rural settings. North Carolina has made significant investments in engaging with the IDD community but not with the express purpose of developing a patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) agenda that can inform best practices to meet the needs of this population.
Proposed Solution to the Problem: Engagement with AYAs with IDD and their families in PCOR/CER is urgently needed to explore the solutions to support thriving during the vulnerable transition to adulthood. The project team proposes co-developing a toolkit (“Thriving in Transition PCOR Roadmap”) that outlines core PCOR/CER priorities for the IDD community and co-designs solutions for meaningful community-research engagement to advance PCOR/CER priorities.
Objectives: The goal is to build sustainable and meaningful partnerships between researchers, AYAs with IDD, and their families to enhance the team’s capacity to conduct PCOR/CER with, and not on, the IDD community. This will be done by:
- Building equitable, sustainable partnerships between researchers, AYAs with IDD, and their families
- Establishing a shared understanding of how to foster usefulness and trustworthiness of PCOR/CER
- Building a patient-important prioritized research agenda
- Identifying solutions to foster meaningful engagement in research and relationships between PCOR/CER researchers and stakeholders to ignite new PCOR/CER IDD studies
- Creating and distributing the Thriving in Transition PCOR Roadmap
Activities: Develop a steering committee with representation from the AYA IDD community to inform processes, implement community engagement studios with patient partners, conduct a photo elicitation project with AYAs with IDD, conduct literature review, conduct community-based prioritization process, and conduct co-design workshops.
Projected Outcomes and Outputs: The team will develop and disseminate the Thriving in Transition PCOR Roadmap that outlines how researchers and the AYA with IDD community can foster meaningful engagement in PCOR/CER so that the community’s most pressing needs are prioritized. The team will also increase researchers’ cultural sensitivity to actively engage AYA with IDD and their families and enhance the community’s engagement in PCOR/CER. This will be achieved through the dissemination of cultural humility trainings so that researchers can meaningfully engage the IDD community in research that incorporates their needs and priorities.
Patient and Stakeholder Engagement Plan: Stakeholders involved are AYAs with IDD, their caregivers, patient advocates, providers, researchers, community-based organizations, and advocacy groups. The team proposes five strategies to achieve meaningful stakeholder engagement: embedded patient advocate collaborators with trusting ties to key rural, Black, and Latinx communities; dynamic stakeholder co-learning collaborative steering committee who will meet monthly; participatory community forums, also known as community engagement studios (CES), with the IDD community; photo expression project with AYA with IDD; and co-design workshops with multiple stakeholders, including AYA with IDD and their families.
Project Collaborators: Duke University will lead this project with collaboration with key IDD community-based organizations and advocacy groups.