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NORC at the University Chicago

National Center of Excellence for Patient-Centered Outcomes Research Data

A cheerful caregiver is outdoors in the yard of the nursing home with elderly patients having a laugh with them.
A multi-pronged effort to improve data capacity for patient-centered outcomes research
  • Client
    U.S. Health & Human Services Office of the Assistant Secretary for Planning and Evaluation (ASPE)
  • Dates
    September 2023 - Present

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) was created by the Affordable Care Act in 2010 to advance a healthcare learning system informed by evidence-based care and integrated 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 through a portfolio of inter-departmental federal projects funded through OS-PCORTF. These projects assist with the implementation of the OS-PCORTF Strategic Plan. 

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 consortia of OS-PCORTF project teams and agency experts charged with developing innovations to advance PCOR data infrastructure, promotes OS-PCORTF projects and products among the researcher community, conducts qualitative and quantitative research to develop publications focused on advancing PCOR data capacity, and conducts ongoing monitoring and evaluation of NCE activities so that the impact of OS-PCORTF can be communicated.

Result

NORC’s work on the NCE will further ASPE’s efforts to achieve the aims of the OS-PCORTF Strategic Plan and advance data infrastructure for PCOR.

NORC’s work across the domains will further ASPE’s efforts towards the OS-PCORTF Strategic Plan. The NCE will support ASPE in advancing data infrastructure for PCOR in high-priority topic areas such as maternal health and health equity by convening experts in multi-agency efforts. NORC anticipates the NCE will expand ASPE’s reach of OS-PCORTF products to more end-users through dissemination activities such as webinars and workshops. The NCE will be pivotal in producing reports that will inform opportunities for future data infrastructure advancements. The NCE will enable ASPE to demonstrate the impact of the OS-PCORTF portfolio to various stakeholders including Congress, other federal agencies, researchers, and patients.

Project Leads

  • Prashila Dullabh

    Vice President & Senior Fellow
    Executive Project Director & Data Infrastructure Lead

  • Priyanka Desai

    Senior Research Scientist
    Community Engagement Lead

  • Mithuna Srinivasan

    Principal Research Scientist & Applied Health Economist
    Development and Innovation Lead

  • Rina Dhopeshwarkar

    Principal Research Scientist
    Planning and Evaluation Lead

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