Improving data infrastructure for patient-centered outcomes research for people with intellectual and developmental disabilities
- Collection:
- Health Policy and Services Research
- Alternate Title(s):
- Final Report
- Author(s):
- Dhopeshwarkar, Rina, author Rotondo, Christina, author Jiménez, Frances, author Ryan, Sofia, author Karimi, Madjid, author Plourde, Emma, author Dullabh, Prashila, author
- Contributor(s):
- United States. Department of Health and Human Services. Office of the Assistant Secretary for Planning and Evaluation, issuing body. United States. Department of Health and Human Services. Office of the Assistant Secretary for Planning and Evaluation. Office of the Secretary Patient-Centered Outomes Research Trust Fund, issuing body. NORC (Organization), issuing body.
- Publication:
- Washington, D.C. : Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, July 26, 2022
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Developmental Disabilities Intellectual Disability Patient-Centered Care Routinely Collected Health Data United States
- Genre(s):
- Technical Report
- Abstract:
- This report describes insights gained from key informant interviews and an ASPE-hosted listening session on short-term opportunities for improving patient-centered outcomes research (PCOR) data infrastructure that addresses the needs of individuals with intellectual and developmental disabilities (ID/DD). Key informants prioritized three opportunities to enhance data infrastructure for PCOR related to individuals with ID/DD for pursuit under the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS PCORTF): (1) standardize the collection of ID/DD status at the point of care through development of standards and policy changes to promote their adoption; (2) address gaps in standardized outcome measures important to individuals with ID/DD; and 3) support the development of robust data linkages programs for Transformed Medicaid Statistical Information System (T-MSIS) data and other federal data sources. Key informant interviews identified potential future activities related to all three priority opportunities, as well as two additional activities that would support all three opportunities: (1) develop a standardized definition of ID/DD; and (2) support development and adoption of data standards for ID/DD service systems. A listening session panel consisting of ten experts raised considerations regarding the feasibility and potential impact of the ideas raised during key informant interviews, as well as additional considerations for implementing projects related to each opportunity. Given ASPE's role in coordinating intradepartmental projects to strengthen PCOR data infrastructure, the OS PCORTF is well positioned to engage with federal partners and the ID/DD community to implement projects that address key opportunities related to improving data infrastructure for ID/DD PCOR.
- Copyright:
- The National Library of Medicine believes this item to be in the public domain. (More information)
- Extent:
- 1 online resource (1 PDF file (iv, 17 pages))
- Illustrations:
- Illustrations
- NLM Unique ID:
- 9918574277006676 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/9918574277006676