PCORI-UNC-Project Benefit

2023

The main objectives for the project are to improve capacity to conduct patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) in the area of healthcare transition (HCT), improve IDD stakeholder engagement in PCOR/CER, and to enhance research partnerships across stakeholders, medical providers, and researchers. The aims to achieve the objectives are: (1) To co-create an IDD healthcare transition research roadmap by collecting and summarizing IDD stakeholder perceptions and experiences with healthcare transition and their feedback and recommendations regarding PCOR/CER in the area of HCT; (2) To develop an IDD-accessible virtual training on PCOR/CER in the area of HCT by partnering with IDD stakeholders and integrating their perspectives, experiences, and recommendations; (3) To develop a theoretical framework for partnering with diverse IDD stakeholders in PCOR/CER by engaging them in an iterative and interactive process that identifies promising components and strategies for improving IDD stakeholder research partnerships and engagement; and (4) To develop a network of PCOR/CER-trained IDD stakeholders invested in partnering for future HCT research.

Continuing Education/Community Training

Other

Professionals and Para-Professionals, Children/Adolescents with Disabilities/SHCN

Racial or Ethnic Minorities

National

N/A