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ERIC Number: EJ1426992
Record Type: Journal
Publication Date: 2024-May
Pages: 11
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1944-7515
EISSN: EISSN-1944-7558
Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities
Rina Dhopeshwarkar; Frances Jiménez; Sofia Ryan; Emma Plourde; Madjid Karimi
American Journal on Intellectual and Developmental Disabilities, v129 n3 p231-241 2024
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.
American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: https://meridian.allenpress.com/aaidd
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A