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Considerations for building federal data capacity for patient-centered outcomes research related to intellectual and developmental disabilities
Considerations for building federal data capacity for patient-centered outcomes research related to intellectual and developmental disabilities
- Collection:
- Health Policy and Services Research
- Author(s):
- Dhopeshwarkar, Rina, author
Heaney-Huls, Krysta, author
Hovey, Lauren, author
Leaphart, Desirae, 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.
- Publication:
- Washington, D.C. : Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, September 22, 2021
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Data Collection
Developmental Disabilities
Intellectual Disability
Patient-Centered Care
Research Design
United States
United States. Department of Health and Human Services - Genre(s):
- Technical Report
- Abstract:
- In 2021, NORC at the University of Chicago (NORC) completed an environmental scan that explored existing data infrastructure capacity to conduct patient-centered outcomes research (PCOR) for people with intellectual and developmental disabilities (ID/DD). NORC placed emphasis on research that is person-centric, meaning focused holistically on people’s physical, mental, emotional, and social health and outcomes. This report describes the current state of PCOR data infrastructure resources related to ID/DD, highlights data issues in the ID/DD research landscape that require more research, and identifies opportunities to enhance data infrastructure to improve PCOR for ID/DD. Since 2010, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) has managed the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) on behalf of the U.S. Department of Health and Human Services (HHS) Secretary. The OS-PCORTF was created to build national data capacity and infrastructure to support PCOR that provides decision-makers with objective, scientific evidence on the effectiveness of treatments, services, and other interventions used in health care. Reauthorization of the OS PCORTF extended this research funding through 2029 and identified ID/DD as a priority topic. The results of this environmental scan are intended to inform ASPE’s data infrastructure development strategy that enables PCOR for the ID/DD population. The environmental scan consisted of three activities: (1) a review of peer-reviewed and grey literature; (2) key informant interviews with seven ID/DD data and research experts; and (3) input from a technical expert panel (TEP) that represented HHS agencies, the Department of Education, and the Department of Labor. These activities generated a list of 23 opportunities to improve the data infrastructure for ID/DD PCOR, and thereby enhance researchers’ ability to conduct PCOR. These opportunities offer ways to improve the use of data to identify people with ID/DD and to measure social service and medical interventions, as well as person centered outcomes. In this report, the discussion of opportunities is organized to reflect OS-PCORTF’s five functionalities for building PCOR data capacity: (1) use of clinical data for research; (2) collection and use of participant-provided information; (3) linking of clinical and other data for research; (4) standardized collection of standardized clinical data; and (5) use of enhanced, publicly funded data systems for research.
- Copyright:
- The National Library of Medicine believes this item to be in the public domain. (More information)
- Extent:
- 1 online resource (1 PDF file (v, 69 pages))
- Illustrations:
- Illustrations
- NLM Unique ID:
- 9918367687806676 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/9918367687806676