By Jill Pease
People with intellectual and developmental disabilities experience significant gaps in health outcomes, yet there is limited, large-scale evidence to guide which clinical and community interventions most effectively improve their health and quality of life.
Jessica Kramer, Ph.D., OTR/L, an associate professor in the Department of Occupational Therapy at the University of Florida College of Public Health and Health Professions, and Elijah Thomas, a member of Kramer’s Youth & Young Adult Empowerment, Leadership & Learning, or YELL, Lab, served on a Patient-Centered Outcomes Research Institute, or PCORI, work group tasked with recommending a research agenda that addresses those gaps.
The work group’s new report, “A Road Map for Accelerating Research in Intellectual and Developmental Disabilities Using PCORnet,” seeks to advance the state of the science while also identifying ways in which large health datasets can be leveraged to include people with intellectual and development disabilities, or IDD.
“Inclusion is important for the special needs community for adults,” said Thomas, who brought his expertise as a young adult with lived experience with IDD to the work group.
The 15-member work group established three broad areas where research is needed to achieve health equity for people with IDD:
- Interventions and outcomes related to community, home, quality of life and physical and mental function
- Evidence to inform clinical practice across the life span for individuals with IDD
- Health care settings and workforce that meet the needs of individuals with IDD
PCORnet, a PCORI-funded research resource with data from health care encounters with more than 47 million Americans, could be optimized to help answer important questions about the effectiveness of interventions among people with IDD, the work group wrote.
“It’s so important that the larger health system, and databases used to evaluate our health systems, include measures that reflect the voices and direct experiences of people with IDD,” said Kramer, whose PCORI-funded research has focused on mental health and community participation among adolescents and young adults with IDD. “That is a clear path to understanding needs, gaps, what works best, and achieving health equity. This is really exciting because our research team develops accessible patient reported outcome measures, so we hope our work is coming full circle!”