National Center of Excellence for Patient-Centered Outcomes Research Data
Problem
ASPE is charged with building and improving data capacity for patient-centered outcomes research (PCOR).
The Office of the Secretary’s Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) advances a healthcare learning system that uses evidence-based care and shared decision-making among clinicians, patients, and caregivers. To support the need for high-quality, accessible data to generate this evidence base, the U.S. Department of Health and Human Services (HHS) Assistant Secretary for Planning and Evaluation (ASPE) engages in activities that enhance data infrastructure for PCOR and comparative effectiveness research through a portfolio of inter-departmental federal projects funded through OS-PCORTF. These activities include enhancing federal data sets, expanding data linkages, advancing data exchange standards, and exploring emerging technologies like artificial intelligence.
Solution
NORC is a part of the National Center of Excellence (NCE) for PCOR to support ASPE’s federal efforts to improve PCOR data infrastructure.
NORC and our partners have managed ASPE’s PCOR Resource Center for Data Infrastructure since 2015. In 2023, ASPE contracted NORC to create a National Center for Excellence (NCE) by expanding upon the PCOR Resource Center for Data Infrastructure.
The NCE serves ASPE and its federal partners, OS-PCORTF awardees, and the PCOR community in five domains:
Data Infrastructure
Community Engagement
Data Development and Innovation
Planning and Evaluation
Technical and Administrative Management
For this project, NORC supports ASPE by developing innovations to advance PCOR data infrastructure. This entails creating resources and opportunities to promote OS-PCORTF projects and products among the researcher community, conducting literature reviews, conducting analyses of claims and electronic health record (EHR) data, leading pilot studies using real-world data to expand PCOR data capacity, and conducting an evaluation of OS-PCORTF activities.
Result
NORC will help ASPE strengthen PCOR data infrastructure through analytical expertise and by demonstrating OS‑PCORTF portfolio impact.
NORC’s work across the domains will strengthen ASPE’s efforts to advance data infrastructure for PCOR in high-priority topic areas such as chronic diseases, maternal health, behavioral health, and artificial intelligence. The NCE remains central to this effort by conducting analytical work, such as building algorithms, conducting pilot studies, engaging in qualitative research with subject matter experts and patients with real-world experience, and performing quantitative analyses using data sources like claims and electronic health records, to inform opportunities for future data infrastructure improvements. Additionally, the NCE will enable ASPE to demonstrate the impact of the OS-PCORTF portfolio to key stakeholders, including Congress, other federal agencies, researchers, and patients.
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Project Leads
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Prashila Dullabh
Vice President & Senior FellowExecutive Project Director & Data Infrastructure Lead -
Priyanka Desai
Principal Research ScientistCommunity Engagement Lead -
Mithuna Srinivasan
Principal Research Scientist & Applied Health EconomistDevelopment and Innovation Lead -
Rina Dhopeshwarkar
Principal Research ScientistPlanning and Evaluation Lead
