Working to Make Research More Inclusive
As National Disabilities Pride Month is recognized during July, students in the MGH Institute’s Partnership Lab, including Maddie Brodeur, OTD’24, are working with Dr. Ariel Schwartz on a project whose goal is to include more individuals with intellectual and developmental disabilities in research
By Pat Massman
When Maddie Brodeur joined the Research Ethics for All project last September, she was sure of two things. She had never done research, but accessibility was one of her biggest priorities. Since then, the second-year Doctor of Occupational Therapy student has become well versed on the intersection of the two.
The project is a joint endeavor of Assistant Professor of Occupational Therapy Dr. Ariel Schwartz, director of the MGH Institute’s Participatory Research Supporting Health, Inclusion, and Participation (Partnership Lab) and Syracuse University’s Professor of Public Health and Associate Dean of Research, Dr. Katherine McDonald. Its goal: to create an accessible research ethics training that can further the goal and process of hiring individuals with intellectual and developmental disabilities to work on research teams.
“We cannot simply study individuals with intellectual and developmental disabilities without making sure that they're included in each aspect of that research,” said Brodeur, who noted research projects historically have excluded them. “We’ve seen many past failures in research come from not including the voices of the people that were being studied. They can help build our studies from the ground up.”
“Many institutions that conduct research rely on Collaborative Institutional Training Initiative (CITI) programs that outline research ethics principles, basic research processes and terms, and necessary steps that each study needs to take.”
“We found that due to its high-level academic writing, CITI training is really creating a huge barrier to inclusion for individuals with intellectual and developmental disabilities,” said Brodeur, who along with two undergraduate students from Syracuse University is working as a research assistant. “We want to make sure that the individuals that we hire with intellectual and developmental disabilities are able to fully access a research ethics training,” she said. “So we’re creating one that utilizes accessibility and universal design principles throughout.”
Increasing accessibility includes using a variety of methods to present information such as non-academic writing, videos, pictures, and audio files.
For Brodeur, working on the project has broadened her understanding of what accessibility means. “It has helped me understand what accessibility looks like outside of just the physical environment,” she said, noting how it’s even more relevant in July during National Disability Pride Month. “It has made me more aware of not only how to include individuals with disabilities in research or the language that is used in the training, but also just to think of all of the different accessibility issues that people with disabilities may face in their life.”
Research Ethics for All is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award EASC-IDD-00301