Patient-Centered Outcomes Research Trust Fund Reports


  • Building the Data Capacity for Patient-Centered Outcomes Research: 2019 Vignettes
    This report presents brief vignettes that describe highlights of projects that are funded through the OS-PCOR trust fund. The report gives illustrative examples of the value of the work that has been done in partnership with HHS agencies to build data capacity for patient-centered outcomes research. The vignette document showcases accomplishments of the portfolio and explains the usefulness of the products that project teams are producing.

Annual Reports of the OS PCORTF Portfolio

Project Reports

  • Pilot of a Data Quality Framework to Support Patient Matching
    This report is based on a pilot performed to test the Data Quality Framework for Patient Matching Framework. The implementation considerations in this paper are intended to assist organizations in implementing the PDDQ Framework (or the Ambulatory Guide) and to encourage their contributions to developing additional resources to improve the quality of demographic data and patient matching.

  • Source Data Capture From EHRS: Using Standardized Clinical Research Data
    This report describes the methods and tools to automate the flow of structured electronic health record data into external systems and thereby reduce operating costs, save time, and improve data quality for clinical trials. It is based on a collaboration between investigators at the University of California San Francisco (UCSF) and FDA.

  • Improving the Timeliness and Quality of State Electronic Death Registration Systems
    The CDC/National Center for Health Statistics (NCHS) worked with jurisdictions in 19 states to address three objectives. The project worked to strengthen both the states’ mortality data infrastructures and the NCHS infrastructure for more timely delivery of state records the National Death Index (ND) database; conducted intersystem exchanges between EHRs and electronic death registration system using national standards; and linked the National Hospital Care Survey inpatient and emergency department data with the NDI data to pilot test capturing within and post hospital mortality.

  • Conceptualizing a Data Infrastructure for the Capture and Use of Patient-Generated Health Data
    ONC defines patient-generated health data (PGHD) as health-related data created and recorded by or from patients outside of the clinical setting to help address a health concern. The rise of innovative digital health technologies has increased the ease of capturing, using, and sharing PGHD. Although patients are creating an abundance of PGHD, several technical and cultural barriers have slowed the adoption of PGHD in care delivery and research. This report envisions a health IT ecosystem that optimizes PGHD use for care delivery and research settings and developed a Practical Guide that offers suggested practices and questions to consider for the implementation of the capture, use, and sharing of PGHD in clinical and research settings.

  • Creation of LOINC Equivalence Classes
    LOINC provides standardized codes and names for a wide range of clinical observations and provides codes for the observations recorded in a spectrum of settings for diverse applications. This project’s purpose was to create a flexible, extensible, and computable mechanism for rolling up LOINC codes into clinically relevant equivalence groups that enable more efficient processing and aggregation of laboratory and other data from diverse health IT systems.

  • Utilizing Data from Various Partners in a Distributed Manner
    The purpose of this project, Utilizing Data from Various Partners in a Distributed Manner was to develop and test the capability to conduct rapid and secure distributed regression analysis utilizing data for different people that are held at different institutions (horizontally partitioned). In addition, it explored the feasibility of creating a virtual linkage capability to utilize data about a single person that is held at different institutions (vertically partitioned). The goal of the project was to enable research sites within a distributed research network to maintain control of patient-level data while generating valid regression estimates across the network without the need to transfer sensitive information.

  • Cross-Network Directory Service Project
    This project creates an open source interoperable service that allows: 1) data partners to easily participate in multiple data research networks, 2) queries to seamlessly move across such networks, and 3) users to share analytic capabilities and knowledge across networks. This project pilot tested the Cross-Network Directory Service (CNDS) across two existing networks: FDA’s Sentinel and PCORI’s National Patient-Centered Clinical Research Network (PCORnet).

Other Reports