Preparing Individuals with Intellectual or Developmental Disabilities for Engagement in Research During Public Health Emergencies and Disasters

The COVID-19 pandemic has created an environment in which research initiatives have mobilized quickly to improve health outcomes and optimize health systems. However, the engagement of people with intellectual or developmental disability (IDD) in that research response is limited due to the significant barriers and increased risks they experience during public health emergencies. There is a pressing need for collaborative research on how to best support people with IDD and their caregivers during COVID-19, but researchers and partner communities are isolated from each other. The project team will develop the infrastructure needed to engage, support, and prepare people with IDD and their caregivers to rapidly mobilize a research-ready response to and/or during public health emergencies and disasters. The team will leverage its longstanding community partnerships and build on previous PCORI work to support individuals with IDD to engage in rapid response research through the development and use of: accessible remote technologies for communication, training, and research engagement; peer support strategies to offer guidance when navigating research partnerships; and preparation through specialized research training. Specifically, the team will develop: a toolkit for accessible remote collaboration; a peer support manual to translate effective peer support approaches into research engagement strategies; and an online training module specific to individuals with IDD and their families. Collaborators with IDD will assist in the creation of an accessible remote collaboration toolkit that includes step-by-step instructional videos. Peer support specialists will guide the translation of effective peer support methods into research engagement strategies and develop a peer support manual intended to fortify research partnerships with vulnerable populations. The team will develop an online training module that includes best practices for implementing research with people with IDD during public health emergencies and disasters. This module is an addition to the PCORI Family, Youth, Researcher Education (FYREworks) Online Partnership-based Research Training. The team will use an iterative process for development and evaluation of products that includes stakeholder involvement in all phases to meet these objectives. These project outcomes are designed to meet the urgent needs of researchers and community partners to continue meaningful partnerships, and to address the immediate and future needs of people with IDD. Dissemination of these products to other organizations will address challenges presented by the COVID-19 pandemic and enhance their future capacity to engage people with IDD in future emergency-focused research.