Project Description:
Background: PCORI's Engagement Principles describe how research teams can optimize community partners' contributions to patient-centered comparative clinical effectiveness research (CER) to improve health and healthcare outcomes. While teams worldwide have created resources to build capacity and foster engagement of community research partners with intellectual disability, there is not a comprehensive set of resources that support all Engagement Principles across all research phases (i.e., planning, conducting and disseminating research). Further, existing resources are not centrally available and are often study-specific. Thus, teams devote significant effort to develop resources de novo and/or identify and request permission to use and adapt resources from multiple sources.
Objectives:
Identify existing resources and unmet needs for resources by crosswalking existing engagement and capacity building resources to PCORI Engagement Principles and phases of research.
Adapt and develop de novo resources to ensure the Equipped to Engage Toolkit is useable across contexts and projects and supports engagement and capacities of community research partners with intellectual disability in patient-centered CER.
Develop and disseminate a comprehensive, free and ready-to-use web-based toolkit of resources that supports the full engagement and capacities of community research partners with intellectual disability in patient-centered CER.
Activities:
Aim 1
Identify existing engagement and capacity building resources used in patient-centered CER with diverse partners.
Map resources to PCORI Engagement Principles and phases of research.
Using a modified Delphi process, select resources for the Equipped to Engage Toolkit and identify gaps in resources.
Aim 2
Adapt existing resources and develop new resources to ensure comprehensiveness and usability across contexts and projects.
Using a modified Delphi process, evaluate adapted and newly developed resources.
Aim 3
Organize existing, adapted and new resources by Engagement Principle and phase of research on an accessible, free website that includes an asynchronous information-exchange forum.
Disseminate the toolkit through disability-focused organizations and organizations involved in patient-centered CER.
Projected Outcomes and Outputs:
Short-term outcomes during the project period: The Equipped to Engage Toolkit will be completed, with asynchronous forum and dissemination to patient-centered CER researchers conducting intellectual disability-related research through webinars and conference presentations.
Medium-term outcomes (0-2 years post-project period): Adoption and use by teams conducting patient-centered CER will increase capacity of partners with intellectual disability and reduce barriers to engagement of community research partners with intellectual disability in patient-centered CER.
Long-term outcomes (3+ years post-project period): Increased capacity and reduced barriers to engagement of community research partners in intellectual disability-related patient-centered CER will lead to more valid research about individuals with intellectual disability, leading to improved health outcomes.
