Building a United IDD Research Agenda Together

Background: The right of people with disabilities to be full participants in their communities includes the informed choice to be involved in research both as members of methodological design teams and as study participants. However, people with disabilities, particularly people with intellectual and/or developmental disabilities (IDD), have often been excluded from meaningful participation in research.

Proposed Solution to the Problem: The Partnership for People with Disabilities is proposing to improve Virginia Commonwealth University (VCU)’s capacity to conduct patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) by convening a diverse group of people with IDD, families, advocates, medical professionals, interdisciplinary researchers, and VCU Internal Review Board (IRB) staff to hold three web-based "community conversations” over the course of a year. Conversations will be focused on identifying IDD research focus areas grounded in the needs, desires, and priorities of people with IDD and developing a strategic plan for IDD PCOR at VCU (an R1 University), with particular attention to preparing for PCOR/CER to improve health outcomes for people with IDD. The Partnership will work with VCU’s Office of the Vice President for Research and Innovation (OVPRI) and engage our cultural brokering program to ensure that we will have representation from a diverse group of stakeholders.

Objectives: Our strategic aim is to increase the volume of stakeholders engaged in PCOR/CER at VCU which includes the participation of people with IDD in all aspects of research and our goal is to create collaborations among people with IDD, families, and interdisciplinary researchers to promote increased and stakeholder engaged PCOR/CER. Objective 1: In collaboration with advocacy groups and family support organizations, the project team will identify people with IDD and families to participate in conversations about priorities in IDD PCOR and increased involvement in IDD PCOR. Objective 2: In collaboration with the VCU Office of the Vice President of Research and Innovation, the project team will identity researchers to participate in community conversations about priorities in IDD PCOR and how to develop and adapt studies to promote greater involvement. Objective 3: With people with IDD, families, advocates, medical professionals, interdisciplinary researchers, and VCU IRB staff conduct 3 online community conversation meetings with stakeholders to identify priority areas for IDD PCORI. Objective 4: In partnership with people with IDD, families, advocates, medical professionals, interdisciplinary researchers, and VCU IRB staff develop a strategic research plan for IDD PCOR/CER from data gathered through meetings and engagement activities. Objective 5: Integrate priority areas into university-level research agenda and disseminate process to stakeholder networks.

Activities: Activities for Objective 1 include the engagement specialist working with the Arc of Virginia, the Partnerships Constituency group, the Center for Family Involvement, and other IDD stakeholders to identify and recruit participants to participate in strategic planning. For Objective 2 the PI, Co-Investigators, and engagement specialist will work with the OVPRI to identify multidisciplinary researchers across VCU to participate in strategic planning. For Objective 3, activities will be centered on the project team developing a protocol and process for understanding the information and accommodation needs of all participants and conduct necessary pre-meeting work with stakeholders and the facilitator to ensure that they are comfortable and prepared to participate in strategic planning. For Objective 4, the three convening meetings will be held with stakeholders using the community conversations model. This will result in a collaborative strategic plan, the presentation of the strategic plan, identification of best methods of dissemination, and determining how to know if the plan was successful after 6, 12, and 18 months.

Projected Outcomes and Outputs:
Short-term outcomes during the project period include: 

1. A community of researchers and IDD stakeholders is formed. 
2. A collaboratively developed strategic plan for research is developed.
3. A system to track research associated with IDD PCOR/CER strategic plan is developed that includes a specific CER proposal idea and development plan. 
4. The process used to develop the strategic plan is disseminated to the University Centers for Excellence in Developmental Disabilities (UCEDD) and American Association on Intellectual and Developmental Disabilities (AAIDD) network through multiple mechanisms including peer-reviewed publication and a plain language report.  

Medium-term outcomes (0-2 years post-project period) include: 

1. Mechanisms for continued engagement and collaboration with IDD stakeholders are established to maintain and nurture authentic engagement.
2. Arc and Centers for Family Involvement (CFI) document increases in requests for family and people with IDD to engage as stakeholders in PCOR/CER.
3. Teams across VCU and IDD stakeholders develop PCOR/CER proposals stemming from the priorities developed in VCU’s IDD PCOR/CER strategic plan. 
4. 20% increase from 2021-22 baseline of PCOR/CER proposals that include stakeholders with IDD as captured by OSP/OVPRI data.

Long-term outcomes (3+ years post-project period) include: Funded PCOR/CER is implemented at VCU that authentically includes people with IDD as research participants and part of study teams. 100% increase in PCORI awarded projects at VCU that includes the active engagement of people with IDD. Outputs for the project include: Strategic Planning Meeting Materials, Meeting Minutes, Community Conversations Model Process for Developing IDD Strategic Planning for Research, VCU’s Strategic Plan for IDD PCOR/CER.

Patient and Stakeholder Engagement Plan: People with disabilities and families are integrated into every aspect of the project. They comprise the project team, and are integrally involved in every step of development for VCU’s collaborative strategic PCOR/CER plan for IDD health outcomes. People with disabilities and families will also help support dissemination efforts to promote their authentic inclusion in every aspect of the research process at VCU.

Project Collaborators: VCU’s Office of the Vice President for Research and Innovation will be a partner in Building a United IDD Research Agenda Together. Additionally, the Centers for Family Involvement and the Center for Disability Leadership at the Partnership will help support the engagement of people with IDD and their families in every aspect of the project. The Arc of Virginia will also be a significant partner in support engagement efforts for people with IDD and their families.