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

Area of Science:

• Health Services Research
• Disability Studies
• Health Informatics

Background:

• Individuals with intellectual and developmental disabilities (IDD) face persistent health disparities.
• Despite advancements in person-centered care, significant gaps remain in achieving equitable health outcomes.
• Patient-centered outcomes research (PCOR) is crucial for translating evidence into practice and improving well-being.

Purpose of the Study:

• To identify and prioritize opportunities for enhancing the data infrastructure of IDD PCOR.
• To address data gaps that hinder meaningful research and improved health outcomes for individuals with IDD.
• To inform strategies for advancing IDD PCOR data capabilities.

Main Methods:

• Conducted an environmental scan of existing IDD PCOR data infrastructure.
• Engaged in stakeholder outreach to gather diverse perspectives and identify key priorities.
• Analyzed findings to pinpoint actionable opportunities for improvement.

Main Results:

• Identified critical opportunities including: developing standardized research definitions for IDD.
• Advancing data standards for service systems and improving IDD capture at the point of care.
• Developing standardized outcome measures and encouraging Medicaid data utilization for IDD research.

Conclusions:

• Addressing identified data gaps is essential for advancing IDD PCOR.
• Collaborative efforts among government agencies, researchers, and other stakeholders are paramount for success.
• The proposed activities offer a roadmap for strengthening the IDD PCOR data infrastructure.