"Making it so more people do research": leveraging engagement to develop the Equipped to Engage Toolkit for research partners with intellectual disability.

BACKGROUND: People with intellectual disability have been under-engaged in the conduct of research. When engaged in research, community research partners with intellectual disability can enhance relevance, accessibility, translatability, and validity. While some tools exist to support community research partners with intellectual disability to engage in research, few comprehensively address the full lifecycle of a research study and are customizable to teams' unique needs, contexts, and research questions. METHODS: We collaborated with a Workgroup of 20 researchers with and without intellectual disability to develop the Equipped to Engage Toolkit. First, we cross walked existing engagement tools to stages of research (planning, doing, and sharing) and evaluated them for accessibility. Second, we developed new tools to fill gaps in accessible tools and comprehensive coverage of research tasks. Third, five pairs of researchers with and without intellectual disability evaluated the toolkit for utility, likelihood of future use, and accessibility. RESULTS: The Equipped to Engage Toolkit is an online set of 28 ready-to-use, customizable tools usable across planning (17 tools), doing (8 tools), and sharing (3 tools) stages of research. The tools include plain language, images, breaking tasks into small steps and facilitating community research partner input and study leaders' responsivity to input. Participants perceived the toolkit to be usable and accessible and endorsed future use. CONCLUSIONS: Teams can select and customize tools from the Equipped to Engage Toolkit enhance engagement of community research partners with intellectual disability across the full life cycle of a research study. Further, its accessibility features may be relevant to a wide range of community research partners, including those with low literacy or who are unfamiliar with research.