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NORC at the University Chicago

PCOR Resource Center for Data Infrastructure

Medical staff evaluating tests in a tablet while patient and her mother are talking at background
Bolstering federal efforts to expand and improve data capacity for patient-centered outcomes research
  • Client
    Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation
  • Dates
    September 2016 – Present

Problem

HHS wants to improve the availability of data and resources for generating high-quality evidence on the effectiveness of treatments, services, and other health care interventions.

Patients, health care providers, and policymakers and others deserve to know which health care approaches work and which don’t. The Patient-Centered Outcomes Trust Fund (PCORTF) was created by the Affordable Care Act to advance a patient-centered health care system characterized by evidence-based care and integrated decision-making among providers, patients, and caregivers. Recognizing the need for high quality and accessible data to generate this evidence base, the U.S. Department of Health and Human Services (HHS) Assistant Secretary for Planning and Evaluation (ASPE) sought to engage in inter-departmental activities that enhance data infrastructure available to PCOR researchers. They support these activities through a portfolio of federal projects funded through the Office of Secretary PCOR Trust Fund (OS-PCORTF).

Solution

NORC created a dedicated Resource Center to support ASPE’s federal efforts to improve data infrastructure available for patient-centered outcomes research.

Since 2015, NORC and our partner, AcademyHealth, have supported the ASPE by managing the PCOR Resource Center for Data Infrastructure (Resource Center).

The Resource Center serves ASPE, OS-PCORTF awardees, and the PCOR community by providing core services in two key categories:

  1. Technical assistance
  2. Communication and dissemination support
     

As part of our technical assistance function, the NORC team supports strategic planning and rapid learning about emerging data infrastructure needs and other PCOR topics of interest through environmental scans of the literature, convening of technical expert panels (TEPs), and in-depth interviews with experts. Findings from these activities are shared with the PCOR community through published white papers and peer-reviewed articles. Through the Resource Center’s communication and dissemination activities NORC raises awareness about the data sets, data infrastructure resources, methods and tools that are developed by the OS-PCORTF portfolio of projects. These dissemination activities include, workshops, webinars, weekly newsletters, website updates, annual reports, project vignettes, and blog posts.

Result

The Resource Center has helped improve data, methods, and resources available for conducting PCOR studies that generate evidence that informs delivery of patient-centered care.

The Resource Center has helped OS-PCORTF project teams collaborate and share learnings through workshops and webinars and improved the reach of their products through a variety of dissemination activities designed to improve the visibility, and therefore viability, of PCORTF projects. In addition, the annual portfolio reports, website content, and topical project vignettes highlight OS-PCORTF portfolio achievements and public-facing resources available to PCOR researchers.

The Resource Center has produced numerous reports and articles on priority topics such as: improving maternal health data, exchanging social determinants of health data, and enhancing data for implementing an opioid overdose prevention strategy. These reports inform opportunities for future data infrastructure advancements.

Project Leads

Data & Findings

Explore NORC Health Projects

Improving and Enhancing U.S. Vision & Eye Health Surveillance

The most comprehensive system to track eye diseases and vision loss

Client:

Centers for Disease Control and Prevention, Division of Diabetes Translation, Vision Health Initiative

Employers’ Experiences with Managing Prescription Drug Benefits

Understanding how employers manage prescription drug benefits and view pharmacy benefit managers

Client:

Pharmaceutical Care Management Association

Media Influence on Opioid Stigma & Policy Support

Analyzing how partisan media shapes views on opioid use disorder and influences policy

Funder:

National Institute on Drug Abuse
Health Projects