Background: Approximately 750,000 children with special healthcare needs, including those with intellectual and/or developmental disability (IDD), transition from pediatric to adult care each year, but less than 40% of youth with IDD are estimated to receive healthcare transition (HCT) preparation services. Inadequate HCT can lead to poor health outcomes and decreased opportunities to meaningfully participate in community life. Despite the great need for improved HCT practices, individuals with IDD, especially those identifying as Black, Indigenous, and People of Color (BIPOC), are often excluded from IDD and HCT research. This lack of engagement in research by diverse IDD stakeholders has led to a lack of evidence based HCT practices and increased health disparities. For example, BIPOC youth, compared to their White peers, have odds 69% greater of not receiving HCT services, and experience significant health disparities. This lack of engagement in research has significantly limited the IDD community from having a voice. Without research partnerships, it is unlikely that HCT practices will fully meet the needs of diverse individuals with IDD and their families.
Proposed Solution to the Problem: Project BENEFIT offers an ideal solution to the problem of IDD stakeholders’ exclusion from research. This project seeks to solve this problem through the development of partnerships with IDD stakeholder organizations and IDD stakeholders. We will work together to identify and engage 28-32 IDD stakeholders from four different groups: individuals with IDD, family members, researchers, and medical providers. We have also developed a diverse Stakeholder Advisory Committee that will contribute, provide feedback throughout project implementation, and co-create project deliverables.
Objectives: The main objectives 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.
Activities: Members on the Stakeholder Advisory Committee will commit about 12 hours each over the course of the funding period including an initial project orientation meeting, initial PCOR/CER education via PCORI’s Research Fundamentals modules, quarterly meetings with the lead team, and 1 final feedback/review meeting. Each recruited stakeholder from the four groups (n=28-32) will commit about six hours of their time over the course of the funding period, including initial project orientation meeting, PCOR/CER education meeting, one focus group, and one Final Review meeting with all stakeholders.
Projected Outcomes and Outputs:
Short-term outcomes during the project period (and project deliverables) include: (1) IDD HCT research roadmap, (2) A framework for engaging and partnering with diverse IDD stakeholders in PCOR/CER, (3) An IDD-accessible virtual training on PCOR/CER in the area of HCT, (4) An identified network of PCOR/CER-trained IDD stakeholders and organizations partnering in future PCOR/CER in the area of IDD HCT, and (5) Increased IDD stakeholder knowledge and interest in PCOR/CER.
Medium-term outcomes (0-2 years post-project period) include: 1) Dissemination of project deliverables and materials through the University of North Carolina (UNC), Virginia Commonwealth University (VCU), Parent2Parent USA (P2P USA), and UNC Family Support Program networks; 2) Submission of applications for funding to test, refine, and disseminate developed project deliverables; and 3) Application for funding to conduct PCOR/CER in the area of IDD healthcare transition.
Long-term outcomes (3+ years post-project period) include: 1) Improved access to and engagement in PCOR/CER by IDD stakeholders; 2) Increased evidence base for effective HCT services and supports for individuals with IDD and their families; 3) Implementation of partnership framework and virtual training across IDD and disability organizations, medical and rehabilitation settings, academic institutions, and other stakeholder networks; 4) Distribution of research roadmap across larger network of stakeholders, and use of roadmap in identifying and conducting PCOR/CER; 5) Improved HCT and reduced health disparities for all those with IDD, with a specific emphasis on marginalized and under-served communities.
Patient and Stakeholder Engagement Plan: Project BENEFIT was informed and developed in collaboration with numerous IDD stakeholders and advocacy organizations. A Stakeholder Advisory Committee including diverse IDD stakeholders is a foundational component of the proposed project and will be a partner throughout the project duration. Additionally, Project BENEFIT partners with four different groups of IDD stakeholders to get their feedback, preferences, perceptions, and experiences with PCOR/CER and HCT, and provides multiple methods for stakeholder partners to engage and contribute throughout the project duration.
Project Collaborators: UNC School of Medicine (including Carolina Institute of Developmental Disabilities), VCU’s Partnership for People with Disabilities (VCU-PPD), P2P USA, and the UNC Family Support Program.