As youth with intellectual and developmental disabilities (IDD) grow older and transition to adulthood, they face unique health care needs. At the same time, they also experience health care disparities. More research is needed to better understand these needs and disparities, and thanks to a new project led by Vanderbilt Kennedy Center Investigator Beth Malow, M.D., M.S., stakeholders (people with IDD, parents, caregivers, and clinicians) will learn from one another and improve meaningful involvement in the research process.
Malow has received a funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). Over the next two years, Malow and her co-lead, Susan Brasher, Ph.D., R.N., CPNP, FAAN, at Emory University, and other colleagues will unite stakeholders through virtual learning sessions to share points of view, learn from each other, and build trust and meaningful involvement in research that matters in the lives of people with disabilities and their families.
Beth Malow, M.D.
“I’m thrilled to be doing this work through PCORI’s Engagement Award to help develop a community of stakeholders equipped to participate as partners in research,” said Malow. “We have to acknowledge that for IDD research to be effective it has to be bidirectional and involve stakeholders and researchers together in all stages – planning, carrying out the research, and letting the public know about our findings. This project will create a better understanding of what is truly important to people with disabilities and their families and avoid the common assumption that we as researchers and clinicians know what is best. We have as much to learn from our stakeholders as they do from us.”
The first stage of the project is underway, having convened their first Regional Advisory Board that includes individuals on the autism spectrum, parents of individuals with intellectual or developmental disabilities (e.g., Down syndrome, autism), clinicians, and researchers. The Regional Advisory Board spans Tennessee, Georgia, and Missouri, with the intent to provide the project feedback.
The second stage of the project is to implement stakeholder learning sessions delivered using telecommunications through a Project Extension for Community Healthcare Outcomes (Project ECHO) framework to build a learning community that is collaborative and multidirectional (all learners gain knowledge from each other). In this learning community, titled “All StakeholderS Engaged in Research Together” (ASSERT), participants will meet twice monthly, in 60- to 90-minute sessions, for six months. In an ECHO session, a topic is presented, and everyone provides input through interactive exercises in breakout rooms and group shares. Topics include building trust in the disability community, informed consent, choosing research questions, sharing results with participants, and becoming better consumers of research.
“We knew if we were going to be doing work to build capacity, we didn’t want to just lecture to people,” said Malow. “We really wanted people to have an opportunity to learn and for us to learn from them, which is what Project ECHO is all about. We really like and have a lot of experience with the model over the years. It’s the perfect fit for multidirectional learning from each other.”
The third stage of the project is to identify future engagement activities that meet the needs of people with IDD and stakeholders, building toward co-creating research proposals focused on improving health outcomes in transition-age youth and adults with IDD.
“We’re really taking seriously the charge from disability advocates to do ‘nothing about us without us,’” said Malow. “As a clinician and researcher, it makes sense to me that our work must address the real needs of the disability community, and that we learn about those needs from the people themselves. As a mother of two adult sons with autism, it makes sense to me that our family knows what is needed and that the work must be informed by lived experiences.”
“Dr. Malow’s project was selected for Engagement Award funding because it will build a community equipped to participate as partners in clinical effectiveness research and develop partnerships and infrastructure to disseminate PCORI-funded research results,” said Greg Martin, PCORI’s acting Chief Engagement and Dissemination Officer. “We look forward to working with Dr. Malow and her team throughout the course of their project.”
Interested in participating? Contact assert@vumc.org or visit www.vumc.org/sleep-in-autism/.
Top photo by Getty Images with Adobe Stock background
