Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities

• Published in: American journal on intellectual and developmental disabilities Vol. 129; no. 3; p. 231
• Main Authors: Karimi, Madjid, Dhopeshwarkar, Rina, Jiménez, Frances, Ryan, Sofia, Plourde, Emma
• Format: Journal Article
• Language: English
• Published: United States 01-05-2024
• Subjects: Developmental Disabilities - therapy; Humans; Intellectual Disability - therapy; Patient Outcome Assessment; Patient-Centered Care - standards; United States; United States; intellectual and developmental disabilities; patient-centered outcomes research; data infrastructure; people with IDD
• ISSN: 1944-7558
• DOI: 10.1352/1944-7558-129.3.231

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.