Participation of People with Disabilities in Research: A Participatory Approach Mixed-Methods Study and Monitoring Dashboard - The goal of this three-year participatory research project is to increase our understanding of factors contributing to the participation of people with disabilities in research (clinical trials) focused on both people with and without disabilities. This project also develops a dashboard to monitor, measure, and analyze the trends regarding the participation of PWD in research. This project specifically aims to a) quantitatively document the prevailing trends of research participation by PWD, b) qualitatively understand the reasons behind the trends and means to address the challenges, and c) establish a dashboard comprising of both quantitative data (past, current, and future) and qualitative data. To get a comprehensive quantitative understanding of the status of participation and recruitment of PWD in research, an artificial intelligence technique - Large Language Models (LLMs) is employed to classify the clinical trial records of all studies registered in the US thus far. Interviews with a diverse group of people with disabilities and researchers are used for qualitative data collection. Understanding and monitoring the participation of PWD in clinical trials focused on both people with and without disabilities is a critical step in promoting the health of PWD, especially in the context of the recent designation by the National Institutes of Health that PWD are a health disparate population. Guided by a study advisory board, outreach activities involve disseminating findings through local and national efforts, including peer-reviewed publications, briefs, and presentations.
